The Ethics of Care: Moral Knowledge, Communication, and the Art of Caregiving 1472475593, 9781472475596

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The Ethics of Care

Beginning with a focus on the ethical foundations of caregiving in health and expanding towards problems of ethics and justice implicated in a range of issues, this book develops the notion of care itself and its connection to practice. Organized around the themes of culture as a restraint on caregiving in different social contexts and situations, innovative methods in healthcare, and the way in which culture works to position care as part of a rhetorical approach to dependency, responsibility, and justice, The Ethics of Care presents case studies examining institutional responses to end-of-life issues, the notion of informed consent, biomedicine, Indigenous rights, and postcolonialism in care and theoretical approaches to the concept of care. Offering discussions from a variety of disciplinary approaches, including sociology, communication and social theory, as well as hermeneutics, phenomenology and deconstruction, this book will appeal to scholars across the social sciences with interests in healthcare, medicine, justice and in the question of how we think about care as a notion and social form, and its relationship to practice. Alan Blum is Executive Director of the Culture of Cities Centre and Senior Professor of Sociology and Communication and Culture at York University, Canada. He is the author of The Grey Zone in Health and Illness, Theorizing, The Imaginative Structure of the City, and The Lived Experience of the Dying Body, and co-author of On the Beginning of Social Inquiry and Self-Reflection in the Arts and Sciences. Stuart J. Murray is Professor and Canada Research Chair in Rhetoric and Ethics in the Department of English Language and Literature and the Department of Health Sciences at Carleton University, Canada. He is co-editor of Critical Interventions in the Ethics of Healthcare: Challenging the Principle of Autonomy in Bioethics.

Routledge Studies in Health and Social Welfare

1 Researching Trust and Health Edited by Julie Brownlie, Alexandra Greene, and Alexandra Howson 2 Health, Illness and Culture Broken Narratives Edited by Lars-Christer Hydén and Jens Brockmeier 3 Biopolitics and the “Obesity Epidemic” Governing Bodies Edited by Jan Wright and Valerie Harwood 4 Globalization and Health Pathways, Evidence and Policy Edited by Ronald Labonté, Ted Schrecker, Corinne Packer, and Vivien Runnels 5 Gender Equity in Health The Shifting Frontiers of Evidence and Action Edited by Gita Sen and Piroska Östlin 6 Perspectives on Care at Home for Older People Edited by Christine Ceci, Kristín Björnsdóttir, and Mary Ellen Purkis 7 Transnational Social Support Edited by Adrienne Chambon, Wolfgang Schröer, and Cornelia Schweppe 8 The Transformation of Contemporary Health Care The Market, the Laboratory, and the Forum Tiago Moreira 9 Children with Gender Identity Disorder A Clinical, Ethical, and Legal Analysis Simona Giordano 10 Social Housing in Transition Countries Edited by József Hegedüs, Martin Lux, and Nóra Teller 11 Philosophies and Practices of Emancipatory Nursing Social Justice as Praxis Edited by Paula N. Kagan, Marlaine C. Smith, and Peggy L. Chinn 12 Comprehensive Care for HIV/AIDS Community-Based Strategies Teresa L. Scheid 13 The Ethics of Care Moral Knowledge, Communication, and the Art of Caregiving Edited by Alan Blum and Stuart J. Murray

The Ethics of Care Moral knowledge, communication, and the art of caregiving

Edited by Alan Blum and Stuart J. Murray

First published 2017 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 711 Third Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2017 Alan Blum and Stuart J. Murray The right of Alan Blum and Stuart J. Murray to be identified as the authors of the editorial material, and of the authors for their individual chapters, has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging in Publication Data Names: Blum, Alan, 1935–, editor. | Murray, Stuart J., editor. Title: The ethics of care : moral knowledge, communication, and the art of caregiving / edited by Alan Blum and Stuart J. Murray. Other titles: Ethics of care (Blum) Description: Abingdon, Oxon ; New York, NY : Routledge, 2016. | Includes bibliographical references and index. Identifiers: LCCN 2016004017| ISBN 9781472475596 (hardback) | ISBN 9781315616162 (ebook) Subjects: | MESH: Terminal Care – ethics | Caregivers | Communication | Culture | Case Reports Classification: LCC R726.8 | NLM WB 310 | DDC 179.7 – dc23 LC record available at http://lccn.loc.gov/2016004017 ISBN: 978-1-4724-7559-6 (hbk) ISBN: 978-1-3156-1616-2 (ebk) Typeset in Times New Roman by Florence Production Ltd, Stoodleigh, Devon, UK

Contents

List of figures Acknowledgments Notes on contributors Introduction: the dialectic of care Alan Blum

vii viii x 1

PART I

Institutional constraints, consent, and end-of-life 1

Informed consent and the social regulation of caregiver involvement in end-of-life care Diego Llovet

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Judgment, care, and informed consent Philip Walsh

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3

End-of-life conflicts, the law, and Arendt’s political thinking Kieran Bonner

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PART II

Biomedicine, social services, and reparation in the postcolony 4

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The time of a life: ethics and care in the case of a young First Nations girl Stuart J. Murray and Tad Lemieux University–community collaboration with urban Aboriginal peoples: case study of the Healing of the Seven Generations Canoe Project Ginette Lafranière

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Contents

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Postcolonial negotiations: care, Aboriginal rights, and the challenge of democracy David Lynes

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PART III

Communication, ethical collisions, and the realities of care 7

End-of-life as a symbolic order: age in an era of mechanical reproduction Alan Blum

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Good patient–bad patient: the ethical imaginary of cancer Deborah Lynn Steinberg

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The clinical epistemology of Ludwig Binswanger (1881–1966): psychiatry as a science of the singular Elisabetta Basso

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10 Critique of solution-focused brief therapy Carlos Neves

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11 Rethinking the concept of care Han Zhang

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Afterword: care, giving: an ethical critique Stuart J. Murray

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Index

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Figures

8.1 8.2 8.3

Event flyer circulated via Facebook “From Barbara” Memorial Sloan-Kettering Cancer Center advertising campaign

152 159 160

Acknowledgments

Alan Blum and Stuart J. Murray We would like to acknowledge the support of the Canadian Institutes of Health Research (CIHR). This book project was made possible by a 2012–13 CIHR Knowledge Dissemination grant, “Redefining Patient-Centred Care: New Directions in Research on the Social and Ethical Foundations of Caregiving,” which included a public symposium titled “Social Innovation in Health Care: Ethical Foundations of Caregiving,” held at the Centre for Social Innovation in Toronto, Canada on May 5, 2014. We would also like to thank Neil Jordan, at Ashgate, for his support, as well as the anonymous reviewer of our manuscript proposal. Finally, and not least, we offer our thanks to Nasiha Prcic and Han Zhang for their invaluable editorial work on the manuscript, and Eni Mema for assistance.

Kieran Bonner I would like to thank Alan Blum and his colleague, Stuart J. Murray, for inviting me to present at the Symposium in Toronto held in May 2014 and for guiding my paper through the publication process. As part of a panel addressing Diego Llovet’s research, I especially thank Diego for making available his work in the spirit of the shared tradition of critical collaborative analysis. I would also like to thank my colleague at St. Jerome's University, Susan Brophy, who provided an extensive and helpful commentary to my first draft of this paper.

Ginette Lafrenière Heartfelt thanks are attributed to my colleague Donna Dubie, E.D. of the Healing of the Seven Generations with whom I have journeyed since 2003. It has been both an honor and privilege to work with you on this important project. University–community collaboration cannot occur without the work executed by my wonderful students, research assistants and staff for whom I have much affection and admiration. Collectively, we honor the idea of being of service to the larger community in ways that are mutually satisfying and authentic. I say “thank you” for your hard work and dedication to my vision of community-based research.

Acknowledgments ix Special thanks are attributed to the United Way of Kitchener Waterloo for taking a risk and funding the Canoe Project.

David Lynes The intersections developed here between the issues of North American Aboriginal rights and the arts of care and caregiving was energized in the first instance by my attendance at a Symposium held in May, 2014 in Toronto entitled “Social Innovation in Health Care: Ethical Foundations of Caregiving.” Many thanks especially to Alan Blum who organized and inspired the event, for the invitation to attend, and for the many conversations and helpful comments related to the paper that followed. Thanks are also due to St. Francis Xavier University in Antigonish, Nova Scotia, for its on-going support of my research and to the many students of the Sociology of First Nations course that I teach there.

Carlos Neves I would like to thank Dr. Alan Blum, Dr. Saeed Hydaralli, and Dr. Diego Llovett for their encouragement, interest and analytical engagement with the piece and the questions dwelling within it.

Han Zhang I would like to express my sincere gratitude to my advisor Professor Alan Blum for his critical and continuous support of my PhD study and related research. His immense knowledge, inspiration, motivation and guidance helped shape the thinking in this chapter. The research project referenced in this chapter, titled “Understanding Tensions in Elder Care among Chinese Families in Toronto,” was funded by the Community Investment Funding Program of the City of Toronto and led by the Chinese Canadian National Council Toronto Chapter (CCNCTO). I am deeply grateful to the co-investigators of the project, Weijia Tan and Shunxian Ou, and members of the research team, Dr. Rick Sin, Lisa Watt, Ben Wang and Cathy Zhao, for their generous support and engagement throughout the project.

Contributors

Elisabetta Basso is Postdoctoral Fellow at the Centro de Filosofia of the University of Lisbon. She is also an Associate Researcher at the Centre d’Archives de Philosophie et d’Édition des Sciences (CAPHES, CNRS-École Normale Supérieure), Paris, and at the Innovationszentrum Wissensforschung (IZW) of the TU Berlin, where she was an A. von Humboldt-Stiftung postdoctoral fellow from 2012–14. Her research specializations are in contemporary French philosophy, and history and epistemology of psychiatry. She is the author of several publications on Michel Foucault, Ludwig Binswanger, and the history of phenomenological psychiatry. Alan Blum is Executive Director of the Culture of Cities Centre in Toronto; Senior Professor in Sociology, Social and Political Thought, and Communication and Culture at York University, Toronto; and Adjunct Professor at St. Jerome’s University at the University of Waterloo. His current teaching and research is informed by his work developed over the years on theorizing and methods for the analysis of social forms, most recently in studies on the city, materialism, and idealism in everyday life, on institutions such as law, medicine, and the university, on the emotions, and particularly disease and suffering, and on voice, humor, aesthetics and ethics as resources for inquiry. Professor Blum’s recent work on birth, death and dying, the city, and mental disease and illness is informed by this interpretive framework. Kieran Bonner is Professor of Sociology, Chair of Sociology and Legal Studies, and Director of the Human Sciences Initiative at St. Jerome’s University in the University of Waterloo, Canada. He is author of two books, A Great Place to Raise Kids: Interpretation, Science, and the Urban Rural Debate (McGillQueen’s University Press, 1997) and Power and Parenting: A Hermeneutic of the Human Condition (Macmillan, 1998), guest editor of a special issue of the Canadian Journal of Urban Research, guest co-editor of two issues of The Canadian Journal of Irish Studies, and author of articles on theory (role theory, symbolic interactionism, phenomenology, ethnomethodology, hermeneutics, analysis), methodology (reflexivity, dialectic, interpretation, positivism), Arendt, Blum and McHugh, Gadamer, Plato, citizenship, interdisciplinary dialogue, alcohol and the grey zone of health and illness, and the culture of cities (Dublin, Montreal, Toronto).

Contributors xi Ginette Lafrenière is Associate Professor at the Lyle S. Hallman Faculty of Social Work at Wilfrid Laurier University. She is the Director of the Social Innovation Research Group and the Manulife Centre for Community Health Research. The framework that guides and inspires Dr. Lafreniere’s work is university–community collaboration. Dr. Lafreniere believes that public intellectuals have a responsibility to avail their expertise and resources to the communities in which they live and operate. To this end, she has trained, since 2002, over 60 Master’s, doctoral, and post-doctoral students in the art of meaningful and authentic community-based research. Dr. Lafreniere collaborates with dozens of health and social service providers in the province of Ontario on a variety of projects relating to women, Newcomer, and Aboriginal issues. Tad Lemieux is a PhD Candidate in the Department of English Language & Literature at Carleton University in Ottawa, Canada. His dissertation research is situated in the Canadian Arctic and investigates Inuit and Aboriginal claims to sovereignty in the context of neoliberalism. Diego Llovet is a sociologist of health and illness with an interest in issues of cancer prevention and control. He is currently a Behavioral Scientist with the Cancer Screening Unit at Cancer Care Ontario, where he conducts studies to inform the design and improvement of province-wide cancer screening programs and related health services. Previously, he was Qualitative Lead Researcher at Sunnybrook Research Institute, where he led a large study to promote colorectal cancer screening through persuasive communication, and another one to inform the possible implementation of a lung cancer screening program for heavy smokers. As a graduate student, he was a member of the Culture of Cities Centre for 9 years, where he conducted research on the ethics of caregiving in medical and public health contexts. He received his PhD (2012) and MA from York University and his undergraduate degree from the University of Buenos Aires in Argentina. He is a past holder of a Social Sciences and Humanities Research Council of Canada (SSHRC) Doctoral Fellowship. He thrives in multi-disciplinary teams and very much enjoys the experience of effective collaboration. David Lynes is Associate Professor of Sociology at St. Francis Xavier University in Nova Scotia. He teaches and researches in the areas of postcolonial theory, contemporary and classical social theory, and North America’s First Nations and Aboriginal rights. He is also the co-coordinator of the Annual International Conference on Analytic Social Theory held in Syros, Greece. Stuart J. Murray is Professor and Canada Research Chair in Rhetoric and Ethics, cross-appointed in the Departments of English Language and Literature and Health Sciences at Carleton University in Ottawa, Canada. His work is concerned with the constitution of human subjectivity and the links between the rhetoric and ethics of “life,” in the multiple ways in which this term is deployed. He has published numerous essays and book chapters, as well as a collected volume edited with Dave Holmes, titled, Critical Interventions in the

xii

Contributors Ethics of Healthcare (Ashgate, 2009). He is working on a book-length project on the rhetorical dimensions of biopolitics and bioethics after Foucault, tentatively titled, The Living From The Dead: Disaffirming Biopolitics.

Carlos Neves holds a Master’s degree in Sociology and a Master’s degree in Social Work with a clinical specialization in Children and Families. He provides counseling/therapy services to children, youth, and families in his private practice located in Guelph, Ontario. Carlos’s clinical work is informed by solution-focused, cognitive behavioral, narrative, psychodynamic, and traumafocused approaches to therapy. His research interests include: the client– therapist relationship, the social construction of mental illness, psychoanalysis, moral and aesthetic representations of suicide and death, and the place of hope in the lifeworld. Deborah Lynn Steinberg is Professor of Gender, Culture and Media Studies in the Department of Sociology at the University of Warwick, UK. Her research interests include: cultures of science; gender and sexuality studies; media and cultural theory, and mourning and politics. Her new book Genes and the Bioimaginary: Science, Spectacle, Culture is published by Ashgate (2015). Previous books include: Bodies in Glass: Genetics, Eugenics, Embryo Ethics (Manchester University Press, 1997); Made to Order: The Myth of Reproductive and Genetic Progress (Pergamon Press, 1987); Border Patrols: Policing the Boundaries of Heterosexuality (Cassell, 1989); Mourning Diana: Nation, Culture and the Performance of Grief (Routledge, 1999); and Blairism and the War of Persuasion: Labour’s Passive Revolution (Lawrence & Wishart, 2004). Deborah’s current projects include the co-authored book, Extremities: Cruelty, Realism and Redemption in Film and Television (with Debbie Epstein), and a longer range project with the working title: The Bad Patient: Spectacle and Subjectivity in the Cancer Culture. Philip Walsh is Associate Professor and Chair of the Department of Sociology at York University in Toronto, Canada. His research interests include social theory, the sociology of knowledge, and the philosophy of social science. He is the author of Skepticism, Modernity and Critical Theory (Palgrave, 2003) and Arendt Contra Sociology: Rethinking Theory, Society and its Science (Ashgate, 2015). Han Zhang is a PhD Candidate in the Department of Communication and Culture at York University, Toronto, Canada. Her work is concerned with the notion of care in the cross-cultural context and how culture influences an individual’s subjectivity as a dialectical and topological process. Her research tries to formulate a cultural discourse on care with influences from the humanities and social theories that stress hermeneutic and psychoanalytical approaches to the study of subjectivity and cultural differences. She has a BA in Studio Art and Mathematics from Mount Holyoke College, Massachusetts, and an MA in Communication from the Chinese University of Hong Kong. Han is a recipient of the Ontario Trillium Scholarship and York Graduate Scholarship.

Introduction The dialectic of care Alan Blum

Introduction Conceptions of care pervade not only the field of health and illness around the problem of dealing properly with patients, the problem called healthcare, but enter into all areas of collective life. If the primordial relation of care is often idealized in the bond between mother and child as its sine qua non, the ruler in guises as shepherd, guardian, or representative in political care is an important figure in the line of descent from Plato’s Republic on. And there are great variations in modes of institutionalizing the coexistence of authority and responsibility in relationships such as teaching, professions, therapy, and many kinds of dissemination. In part, I want to begin to investigate the usage of care as a point of departure for inquiry under many similar conditions, an engagement that I hope shall begin to make transparent structures of care and its dialectic as a situation that any wide-awake subject must orient to as an environment of knowledge. One way of grasping care is to understand it as the “real” object assumed in clichés of knowledge transfer or applied knowledge insofar as care for the recipient is the “bottom line” in all models of dissemination as the unspoken object of what is disseminated, the value or use of the transmission for the one to whom it is directed. In classical Greek philosophy such care was encapsulated in the notion of life and the capacity of knowledge to “empower” life as part of the equation of knowledge and power. Yet the empowerment of life as a worthy objective must always work through a dialogue on the means or on the conditions for intervening in such a way, making care for the conditions the fundamental topic of any approach to caregiving. As Arendt (1977, 170–94) suggests, in the absence of care for such conditions, of theorizing, we can only imagine the world as destined to be a ruin. It is worth recovering this notion of the use value of knowledge, and so, of care, modernized in Marx’s politics and Freud’s therapeutics, as a vision of the true benefit of knowledge for its creator and recipient.

Ethics: care for the self Part of this environment must include a sense of responsibility for vulnerability, and so, what I have called a relationship to the “weaker party” (Blum 2011, 101). Yet, there are two senses of the weaker party and of vulnerability that permit us

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not simply to approach this as a task for altruism, as if the weaker party were inevitably a dependent other, but to recognize that the essential and primordial vulnerability pertains to the self as implied in the question we can and should ask of ourselves, what am I to do and what action am I to take? As Foucault suggests, if care for the self is the fundamental task (and query) in self-knowledge, this means that the identity of the weaker party as the other in an interaction always misrecognizes it because the action of self-reference is first and foremost guided by the need to work-through this problem in relation to the subject’s undeveloped conception of the situation. Rancière (2009) recognizes this in his conception of the ignorant schoolmaster, who must resist his sense of superiority that seems to follow from the inequality that frames the relationship in order to come to appreciate his own lack of command over the concept as a degree of weakness. Thus, the leader must resist the hubris of expertise and pedantry that can materialize in conceptions of customer care or service delivery. I begin to survey such issues in developing a grammar of care and in this way need to concede my own “weakness” with respect to the form of care that I seek to formulate in and through an examination of usage that begins with the example of healthcare and its provisioning and leads to considerations of justice. Indeed, many have recognized in a Levinasian mood (Lévinas 1969) that weakness or vulnerability is a parameter of the human condition correlative with the notion of finitude, investing existence with its precarious dependency that Thomas Dumm (2008) names loneliness and that makes responsiveness to grieving tantamount to care. This would make care something like a requirement following from this condition that could enjoin responsibility to anyone and everyone as in Lévinas’s sense of accountability to the face of the other. Lévinas might say: the main condition of care is an orientation, sensitivity, and accountability to and for the face of the other (see what McHugh 2005 does with this conception). We will then need to ask after the grounds of care or the situation in which it might be said to emerge. The ontological tinge of this query has been buried in the ever-present discourse on healthcare, which identifies as definitive some sign of distress visited upon vulnerability, and so, the recognition of a basic asymmetry between resourceful and resourceless with respect to some critical requirement assumed to be shared and for which one or another is expected to initiate responsibility. The Heideggerian conception of care as a universal parameter, intrinsic to the existence of Dasein, can be differentiated from the model of healthcare as delivering services to a recipient suffering an acute condition or some chronic deficiency. Such an ontological view formulates care as following from the basic accountability of humans assumed to be intrinsic to their mutually oriented relations as a condition of intersubjectivity (Weber 1947). Thus, the extreme positions in this usage seem to be the conception of care in health as provisioning under conditions of scarcity and the ontological conception of care as equivalent to self-awareness as two important but limited positions in the discourse. The notion of care seems to be situated between an ontological notion and a conception of service delivery, and to work this out we will proceed by trying to demonstrate care for the idea of care itself and to disclose through this

Introduction: the dialectic of care

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procedure in advance another path into the inquiry, a path I call Impasse Analysis. These are the rudiments intended to spell out the basic parameters of care as a situation of action where the asymmetrical connection invites some initiative to be taken either to relieve the distress, as in the conception of healthcare, or to grasp the need to care as a condition of our common fate, as in ontology. Despite my intellectual fellowship with Stuart J. Murray’s position in his Afterword to this volume, I treat his fear that care might not yield to conceptualization as he suggests, perhaps meaning that it is impossible to define with a sense of finality, as something other than an obstacle but as an incentive for Impasse Analysis, for it is precisely this ambiguity that can and does provide for the work in this volume. Indeed, what Stuart calls “the fraught relation” between care and giving turns out to be one way of framing the problem of this volume as discursively accessible rather than an impediment. As a discourse in collective life we constantly note the operation of such assumptions in many areas when infringements are recognized, such as the absence of responsibility in child support litigation, in tales of rejection and abandonment, in failures to exercise responsibility for care in everyday life, or for showing sensitivity to others who are led to expect such attention and recognition, and in examples of fiction such as Lord Jim or The Fall when characters suffer guilt for inaction in crucial situations. Though a Grey Zone, the very force of the distinction between care and its absence confirms the phenomenon as a social fact and as a perennial problem to negotiate. In this sense the professions have emerged in specific ways as institutionalized mechanisms for the organization of care, and institutions such as university, health, religion, and even the family and its administration by amateurs have been identified as significant situations in caring. The extremes of care assigned to political leadership (and its corrupted shapes as domination, tyranny), or to the parental function (and its corrupted shapes as paternalism, maternalism, abandonment, authoritarianism) often risk glossing dialectical nuances more palpable in teaching, therapy, and healthcare that could then be played back to permit us to better understand these other social forms. Care not only applies to the distress of another, but in its very development and application to any other, must make visible the ambiguous course of action for the one exercising care, positioning us in a triangulated relationship, subject (giver of care), object (cared-for), and the notion of care itself as an enigmatic relationship that connects all and yet exceeds their determinate interaction. In this sense, the “third” of care must be the notion itself, the relationship to the “whatever” of care. This serves to introduce the idea of form in the strongest sense.

Method of Impasse Analysis My method of Impasse Analysis developed with colleagues over the years formulates an interpretation as heuristic rather than algorithmic (see Swanson 1971, 150–5 on the difference), as provoking an impasse, and the impasse making possible a conversation that in its turn demands a narrative as both unfinished and amenable

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to evaluation (just some examples over time: McHugh et al. 1974; Blum and McHugh 1984; Bonner 1988; 1999; 2001; Blum 2003, 2013; 2014; McHugh 2005; Raffel 2013). The narrative is guided by an ideal speaker modeling the ad hoc flow of improvisational theatre and the contingencies of a trajectory of mutually oriented interjections (Blum 2011). I provide some illustrations of this method in the present example by recreating a discourse on care as a provocation that is designed to open up reflection on the problem of justice. In this sense I propose that a conception such as care is like an image, a beginning always in need of development, and as such appears in social life as an “object” that is oriented to in many ways (hence fertilizing usage and a discourse, probably what Deleuze means by an assemblage), and that makes an interpretation, far from a summary of such views, a method designed to open up (and hence provoke) a conversation over the question of the signifier itself (the relationship of care in this case)—what it is and what it is not—that will remain insoluble and irresolute. Therefore, the signifier that is taken to open the analysis is exposed as a site of ambiguity that becomes the locus of a conversation fated to be indeterminate and yet accessible to thought and representation. The production of ambiguity is then not the end of the provocative interpretation but a means of facilitating the conversation by shaping it in terms of a narrative imaginary that is illustrated in the analysis as a specific ethical collision. So if the problem at first seems the question of what is a paradigmatic relationship to care, whether ontological or the provisioning of caregiving, this method is designed to expose the ambiguity inherent in this relationship as if a mirror of collective anxiety over a problem and its possible “solutions,” not by declaring a final judgment but by proposing a specific relationship, in this case, the tendency of any supportive gesture to enforce dependency upon a recipient in ways that complicate the gift of giving and its tenuous relationship to justice.

The scope of care Therefore, even in its typical link to the conventions of caregiving, care has a lineage that exceeds health as part of a discourse on responsibility. A feature of the discourse is its attention to those deemed vulnerable in some sense, for example, the poor, physically dependent, those who are casualties of social section, or of irrational actions and violence, but it is also a category that can include children and even employees. Thus, care can be seen as a requirement, even a demand, calling upon those in certain positions to exercise responsibility for others, but in ways that are always (or typically) contestable. Such expectations invariably lead us to ask to whom care is directed (it could be anyone and everyone), on what occasions, and often, why us and not someone else, where that “someone” might even apply to the recipient as in the vitriolic response that claims we are not obligated to care for those who should take care of themselves. Care then raises questions about the borders of action and the lines separating one from the other. As part of this interpretive terrain we can identify “objects” of care such as the vulnerable, dependent, everyone, or no one if care is merely an abstract universal.

Introduction: the dialectic of care

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We might also identify as a subject only those in position or again everyone or no one since care seems to many to be indefensible as an innate duty, but rather a matter of discretion (for example, for political philosophers who have argued that there is no necessity that binds people to care as a right or duty), in contrast to others who treat the connection between the right to care and the duty to provide it as an indubitable condition for being fully human. In playing off such a Grey Zone concerning assumptions about who deserves what and how, when, where, and why, we note that care connects decisively to a discourse on justice. Then again, between object (recipient) and subject (caregiver) as a relationship, how is care thought to get done, as provisioning or the doing of what is required, or more, as in a generous attempt to give above and beyond the minimum, to offer a degree of hospitality that Bataille (1985) used implicitly to distinguish general from restricted economy? Here what comes to mind is the contrast of Simmel’s miser and spendthrift, as if the doing of care can be desultory as in the provisioning that is procedurally adequate and nothing more, or might reflect a degree of voluptuousness that imparts to its doing an investment of affect that can range from bedside manner to the dedication of absorbed conduct as an enjoyable end in itself (Simmel 1971, 179–87). Yet at these extremes, frugality toward care can be based upon an often justifiable reserve toward the suspicion of malingering and masochism as manipulative tactics, while the enjoyment of care for itself might evoke a whiff of martyrdom that seems to delight a bit too much in its sacrifice. The relationship to care, to taking care of another, is a Grey Zone and never selfevident. Further, if there is the sense of a craft of care or of care as motivated in ways that orient to giving pleasure or even toward changing habits or values, such a version often seems to acquire an aggressive aura that risks making it seem presumptuous in trying to change others (especially today in terms of the fear of disturbing the other to whom we speak). Typically, resistance to such inflections affirms that care should keep to its requirements as maintenance and should try to offer nothing more. The history of this discourse often shows reactions that admonish care that seems to overstep its boundaries (in many different ways) to stay in its place, sometimes taking shape even as legal reprisals. That there are such conflicts in relation to care as notion and action is seen in popular representations that reveal instances of infraction and dispute, cases ranging from examples of indifference to abuse, from neglect, to doing no more than the minimum, to euphemistic and formulaic attending that even robots or teenagers are recruited to provide and are often praised as doing well, to the notion of intimacy as the commitment to protect the solitude of the other that Rilke described in his poetry as the condition of love as a will to be a guardian of the other’s solitude. Further, every relationship discloses the possibility of a mosaic of accusations about infractions of care that display such an infrastructure of interpretations and in this shape, make available an omnipresent and evolving corpus of materials for research and analysis. Friendship, marriage, and all relationships are typically inundated by accusation and reprisal concerning such infractions that range from offenses imagined to be what Goffman calls “slights” to betrayal to perceptions of gross misconduct, all seeming to stimulate a rich region

6 Alan Blum of interpretation around the problem of forgiveness and the conditions that make it deserved, undeserved, or formulaic. Here, infractions against some vision of care can range from revenge to feuds, reprisals, and war, or to amnesia as necessary equipment for living. Care then causes us to ask of some infractions against its name, is this unforgettable? And so, does it qualify for an archive of the unforgiven bits of our histories that we need nurse and savor with relish at its injustice forever, or can we put it to rest?

Constraints on care and the ideal speaker: getting and giving the gift These many concerns arise under conditions of the different settings in which care is exercised, the different types of relationship ranging from the medical practitioner–patient dyad we consider in healthcare, to the relationship of parent to child, teacher to student, and of course leader to citizen. Again, in each case we can ask, is care simply provisioning, the laissez-faire maintenance of survival, or does it intervene to change habits, influence behavior, or to do a kind of reeducation? This tension exists and is contestable in each and every organizational sphere as a struggle between giving extra and letting lie. We might suggest that the craft of care involves the politesse or tact that can take time as in craftsmanship, where care for the other (whether person or self or object) is developed as a sustained focus on the quality, the particular, or the singular that takes shape in the virtue of concentration. This concern for the craft of care as dedication to quality even extends to the practice(s) of writing, reading, and representation in ways that are significant but will not be taken up here. This begins to link care to the hospitality we mention as an openness to the special character of things that Balzac (2010) identified with an aesthetic element in what he called elegance as a relationship to quality, an aliveness to the unspoken or intimate register of words and deeds that escapes determination, leading to an orientation to silence or to what is between the lines that is reflected in (real) generosity toward words and deeds. Could motivated care exemplify for its subject a commitment to emulate and model such hospitality to quality by offering to mediate it in practice as a demonstrable action? Constraints upon such generosity could range from stereotypical expectations to boredom to linguistic pollution (Serres 2011). Restrictions are exemplified in the idea of needing to contain or economize our responses as reflected in obsessions over the scarcity of time (clock watching or continuous “texting” or peeping at our messages), complaints over limited resources as examples (as in the bureaucratic rejoinder to demand that our needs exceed resources). Does care dare to change or confirm another, does it support and/or give other spirit in this more active model of intervention? In this sense many have compared Oedipus to Antigone as different relations to the exercise of care, to its method of intervening, for the city or family (Butler 2000). For example, Oedipus is reputed to have shown care for the living insofar as the enigma of the plague made him think of his duty to the community, whereas

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Antigone formulated care for the familial bond regardless of present effects. For Oedipus everything was copasetic until the plague forced him to think about action as if he was required by external conditions to reflect, whereas the plague could have been an incentive to question its relation to the foundation of the community and its possible legacy of crime, which he avoided examining. Oedipus was indifferent to grounds, treating the plague as what medicine calls symptom removal and not using the occasion to rethink influences of the past, his father Laius, and its enigma, only being absorbed in short-term survival. In other words, Oedipus seemed to lack an unconscious whereas he has been typically used as a figure to personify the unconscious and its convoluted perturbations (see Benardete 2000, 71–83). For example, he is in a position to understand that just as Laius feared losing his power through Oedipus, he Oedipus fears his loss of power and recognition in the same way. In contrast to this relationship to time, Antigone oriented to the family and perpetuity not by acting out of fear for her immediate survival and from a desire for recognition, but through a drive to sustain the vitality and life of a line. Whereas she made care orient to the dead both past and future and so to perpetuity, Oedipus seemed to have a more restricted interest in his present constituency (see Carson 2012 for a most creative translation and interpretation of the play). For institutional constraints, examples come to mind in law, for example, in Canada the Tri-Council proposals on ethical regulations for research, in the typical skepticism of police toward complaints, in medical views of the talky patient, in professional codes such as Do Not Resuscitate Guidelines or Informed Consent policies. In contrast, we might recover guidelines for the creation of jouissance in the action of doing the right thing by framing such action in relation to the classical convention of Plato’s representation of music, or Aristotle’s suggestion that we must learn to take pleasure in doing what is right (as implied, Hobbes’s conception of self-interest could make care a value for protecting the elite from revolution or from being targets of violence). We also note here how guilt and shame are typically used to motivate care by forcing reluctant offspring of decrepit parents to do care out of respect for old ways. Care as what sociology calls motivated compliance, or as organizing ourselves to meet the requirements of a normative order in ways that are unquestioning, are discussed with great vigor in Stuart J. Murray’s Afterword as examples of economic management and service provisioning, and resonate with Weber’s and Foucault’s notion of self-management as an institutional requirement (again, what sociology calls motivated compliance and Lacan has formulated as the jouissance of administration). How do institutions constrain our impulse to do motivated care or to do the right thing (to invest care with affect, with something extra)? The scarcity of time, space, and resources is often used to justify constraint, or as many have said, the prevalence of self-interest (in much Anglo-American political theory) that treats people as needing to see the consequences of gain through their action in order to get pleasure, making it seem that doing what is right is dependent upon selfinterest as in the Hobbesian assumption that self-interest is needed to see care as profitable because self-interest is what makes the world move. Thus, even the

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wholesome desire for self-knowledge can be seen as functional or instrumental in this sense, and we must note here the psychoanalytic conception of knowledge as a defense against uncertainty that represses desire in ways that make functionalism omni-relevant (Phillips 2012, 148–68). Care becomes difficult in a world imagined as ruled by self-interest because it is seen to require other kinds of inducements and incentives in order to supply the giver of care with some anticipation of gain. If we speculate that one must move against one’s nature, it is because human nature has been typically formulated as an incorrigible constraint on care through its generic image as ruled by self-love in ways that make care inevitably into a movement against the grain. How escape the absolute of oneself? One would have to imagine a being without instincts, without a name, and to whom his own image would be unknown. But everything in the world gives us back our own features . . . To present to ourselves, our non-existence before birth and after death, influences us only as a notion and only for a few moments . . . The man who does not adore himself is yet to be born. Everything that lives loves itself. If not, what would be the source of the dread that breaks out in the depths and on the surfaces of life? Each of us is, for himself, the one fixed point in the universe. And if one dies for an idea, it is because it is his idea, and his idea is his life. No critique of any kind will awaken man from his “dogmatic sleep.” (Cioran 1975, 59) The mischievous Cioran suggests that this constraint of the self always endows the capacity for care with an aura of the miraculous, as if we need a special gift to create a breakthrough in our thinking. In Simmel’s (2010) idiom, this concern for something more, for some sense of quality that is intrinsic and undeveloped in finite determinations, reflects the desire of humans for something “more than life” but as an inclination that must emerge as part of life. The gift needed to overcome self-interest is something akin to inspiration as the wonder often assumed to inaugurate philosophy (Hyde 2007). Peter McHugh formulated this feature of desire as our relationship to shared being as part of the capacity and will to hear the call of the particular face of the subject “to the infinity of the moral” by our learning to see and hear that summons as “contained in every particular face” (2005, 129–56). This inspired relation to our shared being as a means of rising above conditions is meant to capture the living space between the infinite and the finite in Hegel (1975) and Lévinas (1969), between the intimate and the thing in Bataille (1992, especially Part 1), possibly between the ontic and the ontological in Heidegger (1962, especially 21–67), between the view and the gaze in Lacan (1981), between discourse and the absolute, and between the unconditioned and sovereign in Derrida (1992), and between rule and principle in work by myself and McHugh (1984), all of which are partial objectifications of the Grey Zone. When we translate the surviving face as the subject or as any “object” of care, we can begin to appreciate how a

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relationship to the form of care remains one of cultivating conditions for such hearing and seeing, for overcoming conditions that might constrain us, and so, for cultivating the gift that might motivate our need to overstep boundaries.

Care as gift We can strengthen these notions by reflecting upon care and its giving as in giving the gift of care, giving voice to voicelessness. Giving the gift of care emerges from a recognition of dependency and vulnerability because in filling in the gap of ineptitude, propping up the unstable capacity for self-determination, we can work to understand the form of intervention as both theory and strategy of practical action. Here then we begin to think through the difference between the exercise of such authority and acting out. The gift gives the gift of drive to life as something extra, the extra touch of commitment, of jouissance, in ways that reveal how it must satisfy needs for doing more and for moving beyond, as in Simmel’s (2010) conception of a desire for more than life. In reflecting upon the mundanity of teaching or doctoring we note how spending time, keeping an open door for access, for office hours or advice, seeks to invest in time and space in order to exemplify care as more than provisioning but as being principled (see Blum and McHugh 1984.) The gift, even of care, of course has a contractual base as sociology has long noted, first in Durkheim’s (1938) conception of the unstated rules of the contract, and in Garfinkel’s (1967) background expectancies. Judith Butler (2014) brings out the implications of the economic model of the contract in her provocative review of Derrida’s work on debt and Nietzsche’s discussion of the contract, but the focus on the indebtedness to commerce leaves unspoken the richness of the sociological legacy. Thus, in terms of care, if we explore its unstated contractual constraints, we can turn to Simmel’s essay on faithfulness and gratitude as our principal resource (1950, 379–96). In other words, the gift of care enjoins the recipient to repay it with gratitude and faithfulness in ways that seem to imitate on the surface the commercial transaction, and yet must exceed these conditions. For example, note how we might say this of the gift of life to everyone (and about God as the bankroller) and of birth, making any child indebted. The convenience of the economic model of a commercial transaction as the sine qua non of the social simply reflects its immediacy as an untheorized beginning for analysis, depriving both gift and indebtedness of their specificity and arresting us in an impasse between commerce and what seems like superstitious yearnings (note how Butler tries to negotiate the exchange between two absolutisms over the death penalty). Seen as a gift, care can always be oriented to as an imposition (as is often charged of reparative and redemptive philosophies of rehabilitation, and extensions of human rights and de jure citizenship) because it seems to impose upon the recipient an obligation of faith and obedience or an acceptance of the status quo by concealing how the equality offered is still not particular. Arguing over informed consent is like arguing over the death penalty: Butler reveals by implication how opposing the death penalty in a situation of judgment is as absolutistic as being for it, raising

10 Alan Blum the question posed in the informed consent chapters of this volume, which pertain to how we can be dialectical in a situation of judgment. In asking how to overcome absolutistic exchange in a way that is not absolutistic, we can see that this question makes transparent the political character of judgment per se and not simply the death penalty. In ways similar to the example of the argument over the death penalty, law can be seen to oppose violence and commit violence in this cause, creating the problem of needing to overcome acting out in the absolutistic rejection of absolutism, or of how to overcome mimetic contagion where the subject imitates the adversary. Indebtedness to the gift is dramatized as fundamental to the discourse on care in discussions of postcolonialism, as David Lynes’s chapter shows so well. The problem of the debt here comes alive in the topic of representation as re-presenting as in the question of who is entitled to speak for whom? Lynes (Chapter 6, this volume) asks, “But how does it follow that those secure in the knowledge of their own rights are thereby either obliged or qualified to defend, restore or care for the rights of others?” This usage raises the question for the discourse on care of responsibility to the other and asks who is indebted to whom, the one cared for as grateful for being taken care of, or the caregiver as dutiful and in a way showing gratitude for being in such a position? This usage brings into the discourse the problem of the unconscious, its divisions, and of the so-called guilty conscience. The notion of the gift not only makes reference to the constraint of indebtedness but reveals the essentially problematic conception of the debt, not only as an indication of the contract, but in its demonstration of the essential place of contractualism in care and the fundamental ambiguity of the contract that this discloses. The contract plays off the idea of oath, vow, and fealty as a primary bond or gesture of allegiance, not only to another, say, a recipient of care, or in the primordial usage, to a ruler or master, but to oneself. Indeed, it is the fundamental commitment in care to oneself that grounds and makes possible the specific forms of allegiance it authorizes. This discloses the primal form of indebtedness to reside in the commitment to self and its participation in what Simmel (2010) calls the Ought. Thus, in Judith Butler’s essay on the death penalty, it is her allegiance to the idea of its inhumanity that must motivate her to search for alternatives such as an overcoming of the impasse created by ideological extremes. Yet, such a position that she develops after Angela Davis (Butler 2014, 33) would seem to apply to anyone who claims allegiance to a doctrine and even, as she recognizes, to the advocates who support the death penalty, creating the impasse of a sacrificial crisis (Girard 1977) that can only be resolved stipulatively. In this way, even the humanity or inhumanity of care must always depend upon gestures of loyalty to notions of the Ought and specifically to some version of the self and its integrity that is ambiguous.

Repaying the debt: theorizing the form of care To study care, to think the being of care, because we assume a difference between care and its absence or non-being, we can formulate the resistance to care instead

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of speculating hypothetically on its absence or a world without care. This difference between what care is and what it is not seems metaphysical, but it is a difference created in life in practice that reflects an acceptance of or resistance to care. The resistance to care is part of life itself and of the discourse, manifested at that point where care can appear as unlike what is other to it (in Plato’s idiom). We must treat resistance not as non-compliant and/or selfish but as oriented in its way as part of its discourse or its significative chain and not limited to deviations. How is the resistance to care possible not as simple opposition but in the conception of its limit? I propose this first to be expressed in the idea of a mechanical relation to the convention. So, for example, if technology reflected in medical advances, distance education, therapy, and surgical techniques makes care seem more powerful, on what grounds can this colonization of care by technology be seen as a deprivation of freedom? Benevolence as killing with kindness or sustaining servility are easy examples, also martyrdom, sadism, and the like, but we should remember De Montaigne’s notion that the probability calculations of medicine standardize the particular and ignore how (in a special sense) one knows one’s own body better than an anonymous other does. So we can resist care because of its impersonal standardization, or as in Parsons’s sick role, for its attempt to rehabilitate us to be productive in a capitalist machine in order to get us back to work. Even more fundamental is the resistance to the Schweitzerian care of Christianity in “love thy neighbor,” on reasonable grounds that we can only love what and who we know, and because anonymous care is either patronizing as in paternalism, or an attempt to foster dependency as in tyrannical populism or in examples of robotic, teenage altruism, or professional obligation. The nurses are good, they are kind and cheery, but beneath their brisk efficiency he can detect—he is not wrong, he has seen it too often in the past— a fatal indifference to their fate, his and his companions. From young Dr. Hansen he feels, beneath the kindly concern, the same indifference. It is as though at some unconscious level these young people who have been assigned to care for them know that they have nothing left to give to the tribe and therefore do not count . . . How did I come to fall into their hands? (Coetzee 2005, 12) Yet it seems true that we need to exercise care toward those with whom we are not intimate as an indication of the respect for our shared being that unites us all (McHugh 2005). McHugh’s paper takes up a relatively undiscussed problem on caregiving that challenges the distinction between care for an intimate attachment and for any other, by raising the question of how we can ground care even for our enemy as we must, that is, the question of how intimacy and anonymity are mixed in a principled relationship to care. Elisabetta Basso’s chapter in this volume (Chapter 9) shows how such a notion of principle can be discerned in Binswanger’s existential psychiatry in its formulation of the imaginary of a subject vis-à-vis a norm that embraces particular and systemic modes of expression, appearing in any conduct as a stylized sign of the self-organizing system of

12 Alan Blum the psyche: in Binswanger’s words that Basso’s quotes,”The ability of the psychiatrist consists therefore in going beyond the singular and contingent psychopathological manifestations in order ‘to look for the principle which rules the formation of the series’,” namely, the a priori structures of experience. Implicitly in bringing out the relation of Binswanger’s work to impasse analysis, she identifies the site of fundamental ambiguity in the relation of the singular to the ontological framework it presupposes. In this way Binswanger’s notion of form of life and its hold upon the subject allows us to appreciate what he calls “apriori structures of experience” as an anticipation of Lacan’s conception of the imaginary. Echoing the words of Roland Kuhn, Basso goes on to say that care then becomes a way in practice to wonder about the style according to which subjects exist. To teach care would then be to try to implement this sense of wonder in a caregiver.

A principled relationship: self-transcendence of care This difference between rule and principle inhabits the space of Simmel’s conception of the tension between the desire for life and for more than life as the space of what he calls self-transcendence as a principled relationship, in our present case, to care. That is, if the convention(s) identify caregiving as rule-governed conduct, self-transcendence begins to intimate a desire for a robust relation to rules, a principled relationship. Such self-transcendence not only influences care for the other but toward one’s own relationship to the world by elevating us to look at externals in a particular way, neither with contempt nor acceptance, but as occasions to question the way a finite characterization makes reference to a degree of infinite and irresolute perplexity, just as the definitive attribute masks a relationship in which it is grounded and through which it emerges. Certainly the category I call here “the reaching out of life beyond itself” is thus meant only symbolically, only with an inclination that it can probably be improved. Taken in its essence, I hold it at all events to be a primary one . . . Insofar as life’s essence goes, transcendence is immanent to it (it is not something that must be added to its being, but instead is constitutive of its being). The simplest and most fundamental instance of what is meant here is self-awareness, which is also the original phenomenon of the living human spirit. (Simmel 2010, 9) Such self-transcendence necessarily produces objectification. For example, representations of conventions such as care and the boundaries and partitioning assumed to reflect its discourse, and the constant dissolution and revision of such categories as part of the movement of life as “something that constantly reaches beyond the bounds of its beyond and which finds its essence in this reaching beyond” (Simmel 2010, 17). It is in this sense that self-transcendence and its fundamental ambiguity in the tension between life and form reinstates the omnirelevance of the Grey Zone in relation to the ambiguity of the “object” of care,

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disclosing how the focus upon recipient might cover over the fundamental problem of the self-affective nature of desire in care. That is, the “bottom line” in care refers not to the one cared for and not to the caregiver, but to the notion of care itself and how it is disseminated and engaged in collective life as a discourse that reveals navigating the problem of justice and its fundamental ambiguity as our common project. The subject is then an ideal speaker inspired by the notion of self-transcendence to engage care and its conventions in ways that might challenge the inevitable and incorrigible self-interest that Cioran identifies. In this way, the self-transcendence that Simmel formulates as our desire for life and for more than life, that is, for the power to exceed our conditions, discloses the self and its malleability as a primary condition. In Simmel’s sense, self-transcendence as the desire to overstep boundaries is itself a feature of the automated conduct of the human in the way that the desire for a corrective is part of life itself. This desire to overstep boundaries materializes in care as the desire to challenge, enhance, elaborate, and remake the conventions of care as both part of life and for more than life, in ways that seek to invest the convention with vitality that it seems to require. Simmel says that any such desire (for example, in relation to conventions such as care) participate in the aesthetic and erotic aspiration to endow the convention with vitality, the desire to overstep boundaries that is fated to materialize in the creation of revisable boundaries ad infinitum. According to Simmel, this is the “real” tension between finite and infinite that we inhabit in the space of life as social beings.

Chapters Stuart J. Murray’s Afterword takes what we call neoliberalism seriously to task because he rightly sees such a doctrine as saturating and governing our relationships to care under contemporary conditions in ways that need to be challenged. For Impasse Analysis, the challenge would overcome the tendency to act out as in simple condemnations of the doctrine that Murray quotes from those like Giroux, but would start to work through the doctrine as a system of desire, an imaginary regime of thought and feeling, in order to grasp it as a system rather than a symptom. This is said in the spirit of Wittgenstein’s advice not to tell a person that they are in error but to show them the road from error to truth. If we do and must begin with neoliberalism as a congeries of practices of symptom management, just what problem is this symptomatic structure trying to work through? This is the path we might follow. So-called neoliberalism seems to make care a requirement with no escape, as in the rule of the normative order (and its figures as “name of the father” or superego) that commands us to care and to be accountable. This gives to its emphasis on caregiving a totalitarian accent despite its best intentions insofar as it is often accused of enforcing a generic conception of care that remains suspicious of any gesture of negation, making care itself the kind of concept my colleague Peter McHugh liked to call soft custard. Thus, Diego Llovet’s chapter (Chapter 1) opens this discussion in the volume on how informed consent forces us to care about

14 Alan Blum choice in a way that immediately displays the tension between the family and the state, or between the person and the law, raising the question of whether we are known better through the lens of anonymous technology than by intimates. What seemed from Hegel on to be an argument over the State v. the Family (Creon v. Antigone), now appears in the Informed Consent debate, in Stuart J. Murray and Tad Lemieux’s chapter on the resistance of the child (Chapter 4), and in Kieran Bonner’s chapter on the resistance of the family (Chapter 3), as the desire (as expressed here) to defend the right “to be sick in my own way” and “to die in my own way” (perhaps with technical relief and nothing else), that materializes in this book as a version of Habermas’s legitimacy crisis as applied to the question of knowledge. What comes to view as the “real” matter is the question of the status of knowledge and its source as anonymous (technology) or as intimate, raising questions about the trust upon which knowledge supposedly depends, a trust making reference to more than “premises,” ordinary language, and the like, but to the “Ought” that Simmel (2010) identified as Other. In modern life the regime tries to transform itself from an anonymous apparatus (a machine) into a more intimate resource (say, a tool) in ways that are modeled by the objective of the computer to be “user friendly,” or in ways that pervade automated usages in all areas of everyday life, supposedly making it easier to navigate. The law such as embodied in the rule of Informed Consent is intended to emancipate the patient from oppression by extending the rights to participate in decision-making, but then can only annul such liberation with standardized categories, expectations, and rules that aggressively undermine this very autonomy. In this way, if Informed Consent stands for the promise of the extension of empowerment to the subject in order to maximize autonomy and dignity, it ends up by inflicting aggression upon that intimate relationship in the name of the objectives of standardization as the sine qua non of the efficient format. A good example is the way the forced choice imposed in requiring the signature to be used in the Informed Consent ritual seems analogous to the debt signature that was demanded of the debtor in accepting the debt bond, which was designed to show one’s agency in one’s own bondage in the same way as the agreement to the Informed Consent form functions like a confession of one’s willingness to accept servitude in the procedure by giving the signature of acquiescence. In Chapter 2, Philip Walsh exposes this tension between substantive and formal rationality in the notion of means-ends calculation and how, especially in reading Max Weber, we see the repression of (so-called) magical means returning as a pervasive ground of any determination, revealing the impossibility of renouncing the magic of value. This is the typical trajectory of all legal codes recognized historically as the antidote to violence that necessarily must inflict violence in order to curb it. The problem of the modern subject, both caregiver and one cared for, is to manage this contradiction and its fundamental ambiguity without going mad (this version of the so-called double standard). This tension summarizes the jouissance of administration as a problem, raising the question of how the subject is formed under such conditions to find pleasure in being law-abiding or rule-governed in ways that must depend upon keeping in check temptations that also offer pleasure.

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The administration of jouissance In contrast to the jouissance of administration and the process of forcing the adaptation of the subject to the demands of the normative order as the “judgmental dope,” in Garfinkel’s (1967) idiom, who is required to exemplify motivated compliance to the order, we must consider what paths are open to such a subject for subverting and/or being innovative in relation to the code. In other words, we must ask if there is a creative life above and beyond the automated character of motivated compliance. At this point the discussion raises the problem of how to administer care, and so, of the capacity for agency. In Carlos Neves’s study (Chapter 10), subjects demand that care be anonymous because technology allows them to be treated by those who don’t know them, where this assumption that cure depends upon impersonal care makes intimacy seem a disturbing and destructive factor worth considering and typically evaded by such a subject. The same notion pervades the Informed Consent debate, the idea that prejudice and partisanship destroy medical impartiality. This example of the dilemma that technology inflicts upon care seems, on the one hand, to free its delivery from restrictions by removing space as a fetter, and yet, on the other hand, enforces in such gestures an anonymous constraint upon the relationship. While the promise of technology to enable us to administer care to those who we do not know might give solace to some and to others either comic relief or disgust, what is always worth considering is the frustration imagined in the face-to-face relationship. That is, if coaching by telephone is assumed to free us for therapy in a faceless encounter, what is the violence imagined in the face-to-face relation of care from which the telephone exchange is expected to offer relief or escape and what does this construal say about the subject and the culture? Carlos Neves suggests that the message here is that coaching frees us from the therapeutic element in therapy and thus gives us (as in Žižek’s examples) substitutes such as tobacco-free tobacco or alcohol-free alcohol, the prospect of distance education that can provide education-free education. Now we are promised therapy-free therapy, that is, therapy without the transference and all of the burdens of the face-to-face. In this shape the formula of globalization discloses how the mantra “love thy neighbor” poses the question of what kind of knowledge of the other qualifies us to care for them or gives us such an entitlement. If resistance affirms that you are not qualified to care for me, this charge is not due to your lack of credentials, but to your lacking intimacy and knowledge in our relationship. Under what grounds is an entitlement possible? In the Informed Consent debate, Diego Llovet suggests that the mandate of selfdetermination and autonomy and the dignity of the patient is ignored in practice as if family is biased and not knowledgeable. Thus, the Consent and Capacity Board (CCB) decides whether the patient’s belief and will is being respected by the substitute decision maker who is one reputed to have knowledge of the patient that the Board lacks. If one side speculates contrafactually that the patient would want to die to escape pain and suffering, the other side affirms that if there is still an opportunity to live, they should live because they would want to go on (or that they shouldn’t because of some economic notion of cost and futility). This tension

16 Alan Blum between views of knowledge and its anonymity, and the intimacy of the subject’s phallocentric position, again reminds us of De Montaigne’s diatribe against medicine’s presumptuous claim to know the patient better than the patient knows him or herself (Starobinski 1985). Note also that if we question the pretense of medicine to be unbiased (which we should), we also can note that intimacy guarantees nothing because when the value of partisanship resides in its commitment, it is one that must always be developed (that is, intimacy can be a basis of any and all unpalatable fundamentalisms, cronyism, ideologies, laissez-faire doctrines, and many crazed positions. Indeed, both the child’s hallucination of Jesus and angels in her room in Stuart J. Murray and Tad Lemieux’s chapter and the family’s adherence to the cliché “never give up” in Kieran Bonner’s chapter are treated by medicine as hallucinations of people who are biased. Further, could the resistance to face-toface therapy that Carlos Neves notes, to neurology as I discuss, and the rejection of medical treatment by the child, all be seen in the same way as hallucinatory by medicine and by the society at large? For that matter, could not the entire way of life of a people and of any minority be treated as special by being seen as an hallucinatory kind of resistance to technology or to progress? Is resistance superstitious or deluded, or does it begin to show a way of trying to solve a problem of care for one who we know; disclosing their dependence upon us and our joint vulnerability in relation to the law, our helplessness in trying to administer this space? Yet as implied, it is also true that extremism of any and every sort is committed in some sense and never deserves prizes because of this, often being deranged and destructive in every way. Care for the wounded is typically anonymous unless they self-select and ask for help. Otherwise it results from searching out a population to identify vulnerable categories. Identifying the wounded or those supposedly damaged and in need of rehabilitation has been an aim of medicalization that was often distrusted and is now of a reparative philosophy often considered with suspicion. A question raised by many relates to the impersonality of such care if based on pity, “altruism,” or obligation as if a demand. In Lacanian usage we might say that many reparative versions of care and of the recipient as damaged goods see the subject as having lost something basic, whereas it might very well be that it is the notion of loss or lack here that is deficient, in other words, it is an avowal of deficiency that is deficient for being without ground, and so lacking in this sense. Ginette Lafrenière’s research with Aboriginals seems to exemplify this attempt to rebuild a population’s creative resources by making a place for them under different conditions.The question here asks how to make care something freely chosen rather than simply forced and obligatory because any conception of care must find such a voice in its practice in order to enjoy what it is doing. This might invite innovative attempts to reinforce craftsmanship in care by collaborating in returning its administration to the “wounded.” Much of what we call the neoliberal discourse treats care as obligation, and so, inflicts a kind of violence upon the caregiver. Han Zhang’s research hypothesizes the rise of suicidal thoughts among older Chinese people as reflecting their recognition that

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this might be forcing their families to accept the obligation to care for them, and so, of often feeling as if they are a burden upon their family. Note too how all children could interpret themselves as burdensome in the same way, making suicidal thoughts a rich repertoire in this kind of symbolic order. Here the rule of universal burdensomeness can certainly be recognized as an interference or distraction in a society committed to productivity and the efficient allocation of time. In China this is also said to be illustrated in the expectation that grandparents will assist fundamentally in child raising in ways that offer relief for those leading busy lives. Here then, the aged can escape being burdens by paying off their debt through child care, or if denying this either/or choice, can do suicide.

Care as loan and indebtedness We can now begin to appreciate how neoliberalism comes to see its world as in need of what it can provide. Basically, neoliberalism also appreciates breaking through the exchange relations with a gift of giving, but in ways that enable us to raise the question of the impasse endemic to this very notion of the gift. It is the status of the gift as a condition of giving, particularly as loan and indebtedness, which the neoliberal discourse makes transparent. For example, the assumption appears as the idea that the inefficiency of the normal run of humankind leads to crises that need to be rectified through a philosophy that will give the gift of technology (quantitative methods, big data, algorithmic calculations) to souls who should be indebted for such a transfer of techniques to govern their inclinations as if a dissemination of self-help advice, and for the transmission of a neutered language in the shape of administrative forms and policies, and simpleminded expositions: the loan of care is seen as enforcing indebtedness for the gift of knowledge in the same way that the extension of human rights that are de jure even for the best of causes destroy differences between those who are treated as the same (age, gender, race) and resistance is treated as a sign of ingratitude. Similarly, the offer of rehabilitation to those who are wounded, and the giving of care to those in need, can be seen as loans that enforce a dependency upon recipients who are expected to repay through faithfulness to productivity that repeats rather than works through (Freud 1914) the curriculum transmitted. In this way, neoliberalism seems not mean-spirited and malicious capitalism, seeing its goodheartedness displayed in its bestowal of beneficence upon an inept and beleaguered population who simply need to accept its gift and loan through the repayment Stuart J. Murray mentions in his Afterword, by thinking of itself only and exclusively as ruled by an entrepreneurial vision and, as I would add, as subject to market value dedicated to working at life as an opportunity for a continuous trajectory of “start-ups” and projects designed to make a pleasing environment. In the same way the European Union was astonished by Greece’s debt, neoliberalism has difficulty grasping how negation might lurk at the spine of resistance to the platitude of well-being as an objective of care. As an opener, let us suggest that real care must be alive to and not astonished by the heart of darkness in every human gesture including happiness.

18 Alan Blum Theorizing care (or any representation and action) in a decisive sense then, always risks disturbing this environment. For example, of the models of care in circulation, we reiterate that care is a universal sign of accountability that can always disrupt the normal course of events by demanding time and concentration that moves against the grain, challenging the ways we speak and act, and in specific cases. Whether we accept our equal responsibility for the casualties of the normative order in the sense (as Simmel1974, 150–78 says) that it is our order that has created the poor and their poverty as well, or we accept the universality of our need to be responsive to the grieving that Dumm describes for the loss of the world each and all of us could experience, care makes it possible to challenge the distinction between winners and losers by trying to represent a road for being as good as possible, for best practices, in a world in which everyone is lost but need not be conceived as a loser.

Care for the trauma as a neo-liberal impasse: triggers, trolls, and the absent dialogue At present, the public talk in societies such as ours, including the art and entertainment of so-called neo liberalism, appears to depend upon its discovery of the “fact” that every life conceals as part of its secret history a trauma that marks it. Much literature and public discourse (see, for example, Medina, 2014) in this vein represents characters struggling to understand their particular histories and in such efforts, to situate themselves in their environments by acting upon initiatives towards being mutually oriented. It is considered a responsibility to alert everyone with “trigger warnings” on topics and writing that could hurt people’s feelings or remind them of uncomfortable events (for example, it is claimed in this article that photos of men in underwear could remind those who have suffered sexual abuse of such atrocities). Warnings are urged for Mrs. Dalloway because it includes reference to suicide, and of course the Merchant of Venice includes references to anti-semitism. In a related way the current fashion of narrative in much research and policy shows no interest in analyzing the data collected, but simply in collecting it in the form of self-reports to thematically reiterate, summarize, and to commiserate with on the grounds that behind every life there is a story about a personal atrocity and that gestures of support for its exposure and testimony is the criterion of any analysis. Speech that engages such stories or talk with vigor, which is fervent, perhaps excessive (passionate we might say) and oriented to read through the surface as literary and intellectual gestures, and to explore resistances and unspoken understandings (as all good interpretive work) always risks treading on the personal feelings of hearers and recipients. For this reason, speakers and writers are cautioned to treat their language as if it can incite triggers that might injure the hearer because language is capable of eliciting “personal” responses. The warning is to be careful because words trigger emotions and can hurt people who suffer complicated traumatic pasts. Thus a tension is instituted formally between the demand of qualitatively attuned speech and writing to be passionate and

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personal (to engage the viewer, hearer, reader), and the fearful admonition not to engage the recipient in this way, in a way that would move them. It seems that the only refuge in such an environment is talk that can monitor itself on the model of a quantitative economy. We venture that sensitivity to the universality of the trauma upon persons, has created a wariness among authors and speakers, encouraging them to respect the volatility that a speech situation invariably rests upon in such a world. Neoliberalism considered this discovery and these institutionalized cautions to be an advance over a situation in which prejudice and hate mongering was assumed to rule, now supposedly furthering an increased sensitivity towards others (their rights, feelings, sensitivities) that were at one time treated with indifference, whether in deranged bigotry or casual stereotyping and loose, ribald characterizations. In Canada, a good example of such sensitivity can be found in the Tri-Council ethical regulations of research that inventory infractions assumed to poison and hurt a subject. Such manifestos and policy documents are assumed to epitomize care for a subject, for hearers, for communication itself. Research is made to include an administrative conception of care as a safeguard legislated to be responsive to triggers. The offensiveness of representations of men in their underwear to victims of sexual abuse reminds us of the history of grievances that seems our legacy of the capitalist system of desire and its imaginary as expressed in Nietzsche’s conception of resentment following from the differentiation of any social order, developed by Max Scheler and Leon Festinger’s social psychological notion of relative deprivation: here we account for Durkheim’s observation that suicide rates increase during times of year when people are represented in festivities and moments of high life because prospective isolates feel most deprived then. Indeed, alcoholics might be warned about representations of drinking, just as many might want to be warned about representations of inter-racial relations, Italians warned about mafia, Chicagoans about gangsters, lonely people about sociable occasions coming up in ads, Jews warned about Christmas celebrations, and gentiles could be alerted to Jewish references and various vernacular gestures in the media. People who are gay and people who are not gay, people of one race and not the other, of one class and not the other, of one age and not the other, people who could be offended by representations of one another even engaging in “normal” courses of activities if their offensiveness offers some association to their history that they deem horrific. Of course, everyone in the middle could claim to be offended by portrayals of wealth and everyone certainly makes claims to be offended by the very sight of poverty and triggers would need to be supplied if this is the case. Carlos Neves’ chapter in this volume (Chapter 10) on the safety, security and (profitability) of telephone therapy is relevant here: real therapy can hurt clients’ feelings and not only that but can reduce our capacity to contact more clients (here, neo-liberalism does two things at once that it thinks is good, helps save people from hurt and makes a profit). The social construction of offensiveness is the environment for such tensions that we now see surfacing under the rubric of neo-liberalism and I anticipated this

20 Alan Blum impasse years ago by reflecting upon an exchange of cigarettes between Wilt Chamberlain and Lennie Bruce during a Bruce performance in a Chicago nightclub (Blum 1992). My attempt at playfulness then would not go over now. Indeed, what was triggered then was this sense of offensiveness integral to the system of desire of capitalism itself, a frustration that pervaded the classroom too as I recall having to negotiate the anxiety of a Jehovah’s witness student over the transexualism presented in the documentary Paris is Burning because of religious scruples (not much different than the indignation over violated scruples of religious fundamentalists in the US and Middle East). We appreciate today through the presence and talkativeness in circulation that the impasse does not die and is reincarnated as “backlash” in the bufoonery of public figures who seem to express in their indignation what is typically characterized as the return of the empire as if any response to hysterical triggering and its alarm system can only be initiated as a form of acting-out by trolls. An analysis of neo-liberalism would have to examine this impasse, essential to any regime of care and its philosophy, as part of the collision occurring around progress and its grey zone. What centers this collision today seems to be a question of the best ways and means of caring for language and this volume offers a path into such an exploration.

Caring about care The chapters in this volume raise a number of issues that I mention here as most salient. In different ways they reveal that doing care depends in the first instance on how we think about care as a notion and social form and how specific assumptions about care and how to care for it are unspoken registers of the relation as a situation of action. The chapters then disclose how in the presence of whatever great technological accomplishments that we might accept and praise, the need to reflect upon their application and value reveals the force of thought in action as the nucleus of a dialogical relationship to care. Throughout, the concern for the point of view of a subject is made transparent whether as the recipient or giver of care, and the ways medicine, social services, therapy, teaching, rehabilitation, reparation, and whatever institutional agents are in play, can justify their conception of the need and desire of this subject and of the legitimacy of their own procedures. It is suggested that “real” care has to be exercised by this problem of assumptions and interpretations of caregiving in order to begin to assess effects and dimensions of interaction, in other words, that doing care assumes an interpretive ground often unspoken and unthought. From this perspective, even good-hearted attempts to protect or redeem the subject, to rehabilitate suffering in the name of ostensibly high purposes, invariably protect assumptions that often need to be challenged. Deborah Steinberg’s chapter (Chapter 8) shows this in her exposure of the rhetorical context of the “war on cancer,” disclosing how the struggle with this disease makes reference to ways in which the symbolic order creates an heroic subject, often a celebrity, existing in time as a warrior rather than a pathetic figure, embattled but emboldened to buy time in a present

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military campaign that empties its “now” of anything other than fantastic hope for future success. These chapters affirm that among such assumptions is the conception of the subject as being conditioned by a partisanship or “subjectivity” that makes reflective assessments of evidence impossible. If we note such a thread in these chapters on biomedicine, neurology, rights discourses, and the social services, we also recognize that the point of view of a patient or of any recipient of care should never be treated as unquestionably the final word on care, for the students who prefer online education, or the patients who prefer telephone therapy, often unite against the face-to-face encounter because its challenge seems disturbing and discomforting. This Grey Zone is a necessary dimension in the situation of care. We note the elements of a sacrificial crisis (Girard 1977) in any discussion of care, exemplified here in the exchange over Informed Consent, over reparative philosophy in the Rights discourse, and over the presumption of incontestable evidence in the molecular idealism of biomedicine, because in all such cases the impersonality of a body of information assembled by experts is pitted against the testimony of a subject for whom the information is assumed relevant, maintaining this age-old cleavage between the near and the far, the intimate and the anonymous, and the (so-called) subjective and the (so-called) objective. Here, this volume raises the question of the most adequate methods for approaching the study of care as such a social phenomenon. The suggestion that caring for care is expressed in an exemplary way in the ontological recognition of how fundamental ambiguity makes being oriented (concerned and circumspect in Heidegger’s idiom) a necessity in human action still can only maintain itself as a beginning and an opening for more, that is, as necessary but insufficient. Thus, caring for care as a concentration upon quality can only remain abstract if it simply avows the superiority of country against city, meaning against technology, quality against quantity, unless avowals such as this that affirm their care for care are grounded in specific conceptions of form and distinction. Indeed, the gift does not simply empower the commitment to care over selfishness, but makes it possible to attempt to embody care in practice hic et nunc in this situation and with reference to this specific configuration. Care does derive its ontological character from the human condition insofar as the indebtedness of humans conveyed in the figure of finitude is akin to a fundamental dependency, which as Adam Phillips (2012) notes, seems part of our human inheritance, as the psychoanalytic version of the debt. This is how care comes to be modeled on paradigms of the shepherd, the parent, leader, professional, and all who are supposed to exercise responsibility to and for dependents. Yet if we are all dependent by virtue of our finitude, care also suggests that we are all in position to be exercised by the dependency of one another as part of what Max Weber called “mutually oriented action.” Whether or not we heed this call is an open question, confirming the call as resting on an agreement that could be otherwise. Care then cannot be responsive to dependency “in general,” but to the specific configuration dependency assumes in particular situations and for particular types of persons, always guided by a desire to listen to the relationship between the finite

22 Alan Blum face and its infinite perplexities. Care then is not simply concerned and circumspect but is engaged by the particularity and form of a situation.

Conclusion The impasse I am suggesting is resident in the humanization of capitalism that helped produce the recognition that human beings are not slaves and should be treated humanely, but where humane treatment is best conceived as a profitable art that can both help and confirm the customer, making the tension between helping and confirming the unspoken impasse in care. Criteria of service and satisfaction shape the environment of care in ways that can and do influence caregiving as a practice, shaping the collision in care between its social and antisocial character as the spine of the discourse we try to engage. Care seems to epitomize social action that is in position to overcome private interest in order to orient reflectively to self and others. In its particular way, then, care takes shape as a manner of formulating oneself and the other as both parts of the condition of the weaker party, as both sharing the common bond of needing to participate in developing a principled relationship to the ambiguity of the conduct or trouble at hand. Whether professional, caregiver in a health-related situation, or teacher, what is weak (unformed) is the notion of care itself and its implicit and abstract character that needs to be engaged by all as a text to develop, explicate, and actualize in the relationship to the particular detail offered as a challenge by another. Such a challenge is what Virilio means by the inevitable interruption of the accident (contingency or externality) that compels us to regain concentration (Lotringer and Virilio 2005). This “weakness” should be seen as comparable to figures standing for the beginning as undeveloped in Hegel, as empty speech in early Lacan, or in the unformed character of any result that always needs to be worked through in Freud’s sense of durcharbeiten (1914). The giver of care takes the lead in exemplifying an impersonal relation to the situation as if both he/she and the other are equal with respect to the situation that they must collaborate in translating. If the apartness of both is apparent and direct for an immediate view, their togetherness is perhaps more imperceptible to an untutored eye, because it needs to recognize such solidarity neither as essentialist nor phallic, but as grounded in their mutual need and desire for a principled relationship as imagined from the position of an ideal speaker engaged by the jouissance of developing an impersonal relationship to the personal situation of care. This is a replay of the necessary tension that Hegel memorialized in the relation between the finite and the infinite and that is being revived as a concern today. As action, care in the best sense must resist treating the situation in an automated manner by instead viewing the symptom (trouble that is presented by the other) as a text to be translated and not simply managed. If care then comes alive in the Greek sense as a rational response to the irrational, the body and the law are apt metonyms for the irrationality of the city, and the giver of care an apt figure for the effort to dispense justice as a translation of the need and desire to be just to the material conditions of speaking together.

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References Arendt, Hannah. 1977. Between Past and Future. Translated by Jerome Kohn. New York: Penguin Books. Bataille, Georges. 1985. Visions of Excess: Selected Writings 1927–1939. Translated by A. Stoekl. Minneapolis, MN: University of Minnesota Press. ——. 1992. Theory of Religion. New York: Zone Books. Blum, Alan. 2003. The Imaginative Structure of the City. Montreal: McGill-Queen’s University Press. ——. 2011. The Grey Zone of Health and Illness. Bristol: Intellect Press. ——. 2013. “Motive, Desire, Drive: The Discourse of Force.” Compaso: Journal of Comparison in Anthropology and Sociology 4(2): 5–18. ——. 2014. “Death, Happiness, and the Meaning of Life: The View from Sociology.” Journal of Classical Sociology 15(1): 24–38. Blum, Alan and Peter McHugh. 1984. Self-Reflection in the Arts and Sciences. Atlantic Highlands, NJ: Humanities Press. Benardete, Seth. 2000. “Sophocles’ Oedipus Tyrannus” In The Argument of the Action, 71–84. Chicago, IL: The University of Chicago Press. Bonner, Kieran. 1998. Power and Parenting: A Hermeneutic of the Human Condition. New York: St. Martin’s Press. ——. 1999. A Great Place to Raise Kids: Interpretation, Science and the Urban-Rural Debate. Montreal: McGill-Queen’s University Press. ——. 2001. “Reflexivity and Interpretive Sociology: The Case of Analysis and the Problem of Nihilism.” Canadian Review of Sociology 35(2): 168–89. Butler, Judith. 2000. Antigone’s Claim: Kinship Between Life and Death. New York: Columbia University Press. ——. 2014. “On Cruelty.” Review of The Death Penalty by Jacques Derrida, translated by Peggy Knupf. London Review of Books, July 17: 31–3. Carson, Anne. 2012. Antigonick (Sophokles). New York: New Directions. Cioran, Emil. 1975 [1949]. A Short History of Decay. New York: Arcade. Coetzee, J.M. 2005. Slow Man. New York: Penguin Books. de Balzac, Honoré. 2010. Treatise on Elegant Living. Cambridge, MA: Wakefield Press. Derrida, Jacques. 1992. Given Time 1: Counterfeit Money. Translated by Peggy Kamuf. Chicago, IL: University of Chicago Press. Dumm, Thomas. 2008. Loneliness as a Way of Life. Cambridge, MA: Harvard University Press. Durkheim, Emile. 1938. The Division of Labor in Society. Glencoe, IL: The Free Press. Freud, Sigmund. 1914. “Remembering, Repeating, and Working-Through: Further Recommendations on the Technique of Psychoanalysis II.” In Complete Psychological Works of Sigmund Freud, Volume 12 (1958), edited and translated by James Strachey, 145–68. London: Hogarth Press. Garfinkel, Harold. 1967. Studies in Ethnomethdology. Upper Saddle River, NJ: Prentice Hall. Girard, René. 1977. Violence and the Sacred. Baltimore, MD: The Johns Hopkins University Press. Goffman, Erving. 1967. Interatction Ritual. New York: Anchor. Hegel, G.W.F. 1975. Logic: Part 1. 3rd ed. Translated by Walter Wallace. Oxford: Clarendon Press. Heidegger, Martin. 1962. Being and Time, Translated by J. Macquarrie and E. Robinson. London: SCM Press.

24 Alan Blum Hyde, Lewis. 2007. The Gift. New York: Vintage Books. Lacan, Jacques. 1981. The Four Fundamental Concepts of Psychoanalysis. Translated by A. Sheridan. New York: W.W. Norton & Company. Lévinas, Emmanual. 1969. Totality and Infinity: An Essay in Exteriority. Translated by A. Lingis. Pittsburgh, PA: Dusquesne University Press. Lotringer, Sylvère and Paul Virilio, 2005.The Accident of Art. New York: Semiotext(e). McHugh, Peter. 2005. “Shared Being, Old Promises and the Just Necessity of Affirmative Action.” Human Studies 28(2): 129–56. McHugh, Peter, Alan Blum, Stanley Raffel, and Daniel Foss. 1974. On the Beginning of Social Inquiry. London: Routledge & Kegan Paul. Medina, Jennifer. 2014. “Warning: The Literary Canon Makes Students Squirm.” The New York Times, May 17. Phillips, Adam. 2012. Missing Out: In Praise of the Unlived Life. New York: Picador. Raffel, Stanley. 2013. The Method of Metaphor. Bristol: Intellect Press. Rancière, Jacques. 1999. Disagreement: Politics and Philosophy. Translated by Julie Rose. Minneapolis, MN: University of Minnesota Press ——. 2009. The Emancipated Spectator. London: Verso. Serres, Michel. 2011. Malfeasance. Stanford, CA: Stanford University Press. Simmel, Georg. 1950. The Sociology of Georg Simmel. Edited by Kurt Wolff. Glencoe, IL: The Free Press. ——. 1971. On Individuality and Social Forms. Edited by Donald Levine. Chicago, IL: The University of Chicago Press. ——. 2010. The View of Life. Chicago, IL: The University of Chicago Press. Starobinski, J. 1985. Montaigne in Motion. Translated by A. Goldhammer. Chicago, IL: The University of Chicago Press. Swanson, G.E. 1971. Social Change. Glencoe, IL: Scott Foresman and Co. Weber, Max. 1947. The Theory of Social and Economic Organization. Glencoe, IL: Free Press.

Part I

Institutional constraints, consent, and end-of-life

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Informed consent and the social regulation of caregiver involvement in end-of-life care1 Diego Llovet

Great expectations: the courts, informed consent and patient self-governance Over the last few decades, commentators in the social sciences have developed a notion (which they have called “medicalization”) to describe the process through which the medical profession2 comes to establish jurisdiction over objects previously exempt from such interventions (Marshall 1998). Using examples like birth (which becomes “hospitalized”) or sadness (which becomes “depression” and an object for psychiatry), this type of literature emphasizes the growth and expansion of medical authority and describes medicine as an increasingly influential force shaping modern culture. But the concept of medicalization is of limited use in describing the transformations of medicine in relation to the broader culture, for medicine shapes its environment (as stated by analysts of medicalization) as much as it is shaped by it (a claim made less often, and one that I wish to explore here). In other words, the medical profession may at times “colonize” the lifeworld, but it is itself not immune to being colonized and transformed, as it were, from the outside. A clear case of this is the medical profession’s subjection to the world of law, which regulates the practice of medicine in various ways, in particular in relation to the doctor–patient relationship and the manner in which medical decisions are required to be made. This process, which can be called “legalization,” brings medical practice under the purview of law, forcefully classifies all medical behavior as either “lawful” or “unlawful,” and socializes practitioners according to ideas of rights and obligations, reshaping the way in which professional care is delivered. A good example of this question of the lawfulness of medical practice is the requirement that professional caregivers seek permission from patients before administering any treatments or procedures. This is an obligation for most (if not all) licensed professional caregivers in the Western world. Echoing a principle valid in many other jurisdictions, the Ontario Health Care Consent Act (1996) clearly states: “no treatment without consent.”

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According to Jay Katz (1984), the principle of consent has long been a legal requirement in places like the United Kingdom and the United States, where courts have over the last 200 years or so routinely enforced the notion that physicians have an obligation to tell patients what procedures are going to be performed on them and to seek consent before proceeding. In American jurisprudence, two cases are often cited as landmarks firmly securing this principle: Pratt v. Davis, of 1905, and Schloendorff v. The Society of New York Hospital, of 1914. In those cases, two female patients had separately complained that doctors had through deception performed surgical procedures without their knowledge or consent: in one case, the patient’s uterus and ovaries were removed, while in the other, a tumor was excised when only an examination under ether had been authorized by the patient. In denouncing the actions of these physicians, each of the courts famously stated: Under a free government at least, the free citizen’s first and greatest right . . . the right to the inviolability of his [sic] person . . . is the subject of universal acquiescence, and this right necessarily forbids a physician or surgeon . . . to violate without permission the bodily integrity of his [sic] patient . . . and [to operate] on him without his [sic] consent or knowledge. (Pratt v. Davis; quoted in Katz 1984, 51) Every human being of adult years and sound mind has a right to determine what shall be done to his [sic] own body; and a surgeon who performs an operation without his [sic] patient’s consent, commits an assault, for which he [sic] is liable in damages. (Schloendorff v. The Society of New York Hospital; quoted in Katz 1984, 51) The legal requirement of consent in medical practice thus reflects an understanding of the patient as the sovereign owner of his or her body and as a bearer of the right to be free from offensive and uninvited contact. In this context, the patient is defined as an agent with the ability to either grant or deny access to his or her body. Caregivers found to have violated this prohibition can be found guilty of assault, battery, or trespass, in the same manner that sex becomes rape and a contract becomes null and void when the parties to the relation are found to have been coerced or misled.3 The notion of consent, in its pure form, thus defines the role of the patient in the medical encounter through the right of refusal, the right to say “no.” It is a safeguard, a defensive mechanism against abuse. But this is not all. The law of consent evolved over time and incorporated the notion that patients have a right to know not only what procedure is going to be performed on them, but also what risks are involved in accepting or rejecting the proposed treatment. This new principle came to be known as “informed consent,” precisely because it points to the fact that patients can only give legally valid consent if they know what they are getting themselves into—that is, if they are well-informed. In his historical reconstruction of the doctrine, Katz (1984) dates the birth of informed consent in the United States on October 22, 1957, when

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California judges hearing the case of a man left paralyzed by a medical intervention established the notion that physicians have an affirmative duty to disclose any serious risks to proposed treatments. In their ruling, the judges said: A physician violates his duty to his patient and subjects himself to liability if he [sic] withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment. (Salgo v. Lelan Stanford Jr. University Board of Trustees; quoted in Katz 1984, 61; my emphasis) In Canada, the introduction of the element of well-informedness as a requirement for consent came about through a 1980 case heard by the Supreme Court: Reibl v. Hughes. There, the judges describe the events relevant to the case. John Reibl, 44 years old at the time of the incident, had complained of headaches, which his family doctor failed to treat successfully. A referral was made to Dr. Robert Hughes, the defendant, who concluded that the headaches were caused by a narrowed artery, which prevented the normal flow of blood to the brain. Dr. Hughes recommended surgery, which he performed competently and with Reibl’s consent. However, as a consequence of surgery, Reibl suffered a massive stroke that left him partially paralyzed and impotent. Unlike Schloendorff and Pratt, Reibl knew which procedure the doctor was going to perform and he had consented to the treatment. He did not know, however, that this particular procedure carried a certain risk of paralysis and even death. Reibl claimed that the doctor had an obligation, which he had breached, to disclose these risks before obtaining consent so as to allow him to consider his options and decide whether or not he wanted to go ahead with the surgery. Further, he made the claim that, had he known of these risks, he wouldn’t have gone ahead with the procedure, since at the time he was only a short time away from retirement and becoming paralyzed would threaten his ability to collect disability benefits from his employer. By failing to disclose these risks, Reibl argued, Dr. Hughes had violated his right to make a rational and well-informed decision that would have best served his interests. In other words, Reibl argued that his injuries were not the product of ill fortune or an accident, but of medical negligence. When questioning Dr. Hughes, Reibl’s attorney formulated the disclosure of risks as a professional duty owed to patients. The transcript reads: Q: Did you tell [the patient] what his chances were of being paralyzed immediately or within a day or two as a result of this surgery? A: No . . . I told him that the chances of being paralyzed if he did not have the operation were greater . . . than if he did have the operation. Q: You attempted to compare risks of being paralyzed by having the surgery or not having the surgery? A: That is correct. Q: I suggest to you, however, that what you did not do was specifically tell your patient that he ran a specific risk of having a stroke and, in

30 Diego Llovet effect, being paralyzed if he had this operation. Do you understand the distinction? A: Yes. (Reibl v. Hughes 1980, 921–2) The Supreme Court validated Reibl’s claims by saying that the explanation that Dr. Hughes gave Reibl failed to adequately disclose the risks of surgery and that it simply indicated that Reibl would be better off to have the operation than not to have it. In other words, the court saw Dr. Hughes’s words to Reibl as simply a recommendation to have surgery, an expert opinion guided by medical knowledge alone. Medical opinion alone, the court believed, is not enough to conclude that a particular treatment best serves the interests of the patient. The judges wrote: Merely because medical evidence established the reasonableness of a recommended operation did not mean that a reasonable person in the patient’s position would necessarily agree to it if proper disclosure had been made of the risks attendant upon it, balanced by those against it. (Reibl v. Hughes 1980, 882) In the court’s view, the question of whether a particular treatment is beneficial to a patient can only be settled by also taking other, non-medical elements into account, such as the values, preferences, and context of the individual patient. In Reibl’s case, these non-medical aspects included the patient’s employment situation and the fact that he was not yet eligible for extended health coverage and would be left unable to collect disability benefits through his employer should he become paralyzed as a consequence of surgery. Additionally, he had strong ideas regarding what he considered to be the life worth living, which would also be relevant to making a rational (or “intelligent,” as the court put it in Salgo v. Stanford) decision regarding treatment. If I have to choose for a short life and live like a normal person or [live] the rest of it like a cripple I would have chosen to live a short life and be a normal person. I wouldn’t drag myself around the way I am doing now. (Reibl v. Hughes 1980, 903) With this decision, the court implicitly made the claim that health and well-being are notions that can only be conceived in relation to the life that is lived by the patient, and not just in relation to the profession’s expert understanding of the body and its troubles. In this case, Dr. Hughes had defined Reibl’s problem as one caused by the narrowing of an artery that prevented blood from flowing to the brain, and acted on this definition without regard for how surgery might affect Reibl’s life, therefore disconnecting the treatment from the person who it was supposed to serve. In other words, health and well-being are not just technical states of affairs (where an unclogged artery equals health). They are, fundamentally, conditions that need to be conceptualized and evaluated in relation to the particular

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person and his or her various contexts. This means that the question in Reibl’s case should be not so much whether or not the artery is clogged, but rather whether surgery is likely to make the patient “healthy” in the eyes of the person who needs to live with the consequences of care. At the level of the organization of the medical encounter, this idea of health and well-being as more than a technical matter translates into a new ideal model of care in which the patient is given a more active role that goes beyond either obeying doctor’s orders or merely consenting to proposed treatments. Under conditions of informed consent, the physician is re-imagined as being unable to know or control in advance the non-medical (contextual) elements that are now said to be key to establishing whether or not a particular treatment will be beneficial to the patient. These contextual elements are, instead, part of the patient’s biography and are, therefore, for him or her to define. This means that, under such conditions, the patient is charged with the responsibility to think about what is important to him or her (in Reibl’s case, to live well and risk early death vs. to live longer and risk disability and poverty) and to use this self-knowledge to decide what treatment better suits his or her interests (i.e. surgery or no surgery). In other words, informed consent demands that the patient develop a self-reflexive relation to whatever conditions he or she inherits and that he or she take responsibility for making decisions and choosing4 the best means to whatever ends are desired. In this manner, individual self-governance becomes a requirement of healthcare and a condition for health and well-being. Moreover, informed consent is thus imagined as a tool that serves to free the patient from the tyranny of medical paternalism and its ugly habit of imposing treatments that serve the interests of the physician more than those of the patient. In Foucauldian speak, we could say that informed consent is a “technology of freedom” in the sense that it is part of a moral order in which the patient figures as a subject to be liberated and empowered vis-à-vis medical authoritarianism and its demands that the always ignorant patient passively submit to the higher powers of the experts. It purports to reverse relations of authority and to effect radical change in the division of labor of care: doctor and patient abandon their traditional custodial roles and now become equal partners in a collaborative relation where patients direct their care by choosing their goals and physicians assist instrumentally by clarifying the best means to the achievement of those ends. Beyond its status as a legal requirement for individual practitioners, informed consent has also found a place in the institutional rhetoric of medicine, where it appears as a mechanism to ensure respect for patient autonomy (see, for example, the World Health Organization’s People at the Centre of Health Care: Harmonizing Mind and Body, People and Systems 2007) and a necessity in a context of healthcare systems that seek to become more “patient-centered” (OMA 2010)—that is, more attuned to the needs of individual patients. The Ontario Medical Association, for example, says that one of the basic tenets of patient-centered care is that patients participate in the decision making process about their treatment options . . . The process

32

Diego Llovet may be shared; the decision resides with the patient. Informed consent is a basic premise in law. (OMA 2010, 39)

As part of “patient-centered care.” informed consent fits today into an agenda of healthcare reform that claims to promote the humanization of healthcare, dialogue between patients and caregivers, as well as patient involvement in medical decision-making.

Disenchantment: critique and the “real” world of informed consent However, this enthusiasm is hardly widespread, and a more critical view of informed consent seems, in fact, to be the norm. Jay Katz, a prominent figure in the field of medical ethics and a long-time advocate for patient rights, for example, argued (1984; 1994) that while the introduction of informed consent by the courts was a promising development, the medical profession had by and large failed to change its view of the patient as a passive recipient of medical care whose participation in decision-making is neither important nor necessary. In an article tellingly titled “Informed Consent—Must it Remain a Fairy Tale?” (1994), Katz claimed that the profession had formally bowed to the doctrine of informed consent without really accepting it, and that in practice informed consent does little more than require that doctors provide some information while keeping decision-making authority to themselves (he notes, further, that physicians typically frame this information in ways that are sure to get the patient’s consent). He believes that informed consent was never translated into a model of meaningful doctor–patient communication and it remained a legal requirement that merely invited physicians to act defensively5 and to treat the patient as a potential liability concern more than as a partner in healthcare. In sum, Katz proposes, informed consent falsely appears to promote patient choice and is, to that extent, a “charade which misleads patients into thinking that they are making decisions when indeed they are not” (1994, 84). This notion of informed consent as the “illusion of choice” finds support in research that looks at how patients make decisions in clinical settings. In a 1997 article published in Social Science and Medicine, Press and Browner observed that the state of California has one of the highest rates of uptake of MSAFP (maternal serum alpha fetoprotein), a prenatal screening test, in the United States, and wondered whether such a rate can simply be explained as the product of a conscious choice made by women in favor of having the test. In order to answer this question, the authors observed interactions between patients and staff at a clinic and conducted interviews, which revealed that the clinic strategically presented information to patients in order to encourage consent and to discourage careful consideration of making such a choice. In presenting the test, for example, staff would be sure to avoid mentioning the voluntary nature of the test, would suggest that it was “routine” and “just a poke in the arm,” and would conceal as far as

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possible the link between the test and abortion, which becomes a relevant option given that the fetal problems that the test may diagnose cannot be treated. The authors also argued that this bias in the presentation of information shaped how women understood the test, given that most of them had trouble formulating their reasons for consenting and that abortion was either not mentioned or rejected as an option. Further, the authors found that the clinic had chosen to actively promote the test (rather than leave it up to the patients) because it feared “wrongful birth” liability and also a state law mandating that it be offered to every patient in the relevant population. Here, we see that the practice of informed consent is far from the ideal of the empowered patient making an autonomous choice and that, as Press and Browner suggest, actual patient choice can be the product of strong but sly institutional pressures and preferences.6 Other research suggests that actual medical practice is generally committed to a model of care that is incompatible with the principles of informed consent. In 1999, for example, the Journal of the American Medical Association published a study (Braddock et al. 1999) that showed that both surgeons and primary care physicians typically fail to foster patient involvement in healthcare decisions. The authors recorded over 1,000 medical encounters and analyzed their content to establish the extent to which clinical decisions (a total of 3,552) had been fully informed. They found that only 9 percent of all decisions met their criteria of full information and, more importantly, that only 0.5 percent of complex decisions (the ones regarding things like cancer screening, choice of anesthesia, and surgery) had been fully informed: according to the authors, their definition of full information was not strict and represented a minimal standard of communication. Along the same lines, and more recently (Krag et al. 2004), a study of 450 Danish general practitioners revealed that physicians tend to disclose side effects to common treatments for strictly medical reasons (such as helping the patient cope with side effects and ensuring compliance with the prescribed treatment), and not for the sake of patient involvement. These two studies explicitly note the gap between the “ethical ideal” of informed consent and actual clinical practices that deny the patient any real involvement, and suggest the need to find ways to make decision-making more participatory. While part of the profession remains committed to making medical culture more open to patient participation (see, for example, Sahin et al. 2010 on the need to improve how much patients really understand of the informed consent process; Pranati 2010 and Bridson et al. 2003 on what can be done to make informed consent more “authentic”), many practitioners remain suspicious of the notion of patient autonomy. Goldberger et al. (1997), for example, propose that full risk disclosure, a requirement of informed consent, is bad for patients because it raises their anxiety levels, which may in turn have adverse medical consequences. In order to demonstrate this, they recruited 50 patients who were about to undergo an invasive form of cardiac testing and gave them two different types of consent forms. One of them had a detailed description of all possible risks and the other merely mentioned “a very low risk of complications.” Researchers found that patients receiving full disclosure had increased anxiety after the informed consent process

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(almost three times that of patients receiving the less informed form) and had a higher need for anxiolytic medication. Along the same lines, Tobias and Souhami (1993) suggested in an opinion piece in the British Medical Journal that fully informed consent can be “needlessly cruel,” as the title of the article states. They argue that patients want reassurance and direction from their physicians, instead of frankness or the opportunity to make their own decisions, and that informed consent can be cruel to patients because it adds to the plight of disease by causing them distress about having to make decisions for which doctors are better suited. Atul Gawande, a surgeon and a prolific writer of commentary on medical issues, voiced a similar position for the general public in The New Yorker in an article (1999) in which he argued that patients are typically in a poor position to make good choices and that it is every doctor’s responsibility to persuade the patient to accept their recommendations. All three articles share the idea that informed consent is bad for patients and their health, and suggest that good physicians use their clinical judgment to decide whether and how much information to share with them.7 While it is clear that informed consent is a divisive issue in the sense that it seems to organize reactions around whether we are either for (e.g. Katz) or against (e.g. Gawande) the idea of patient autonomy, these interventions all seem to agree on one thing: namely, that the doctrine of informed consent has not managed to change the fact that the doctor, and not the patient, is the one making clinical decisions. In other words, all of these voices seem to agree with the notion that informed consent is a “myth,” a “lie, a “charade,” or a “fairy story,”8 either because, as critics claim, it is a bad idea that good doctors refuse to enact in practice, or because, as advocates say, it is a good idea that the medical establishment has failed to adopt due to bad old habits. At any rate, it is clear that informed consent is seen as a fantasy more than as a reality, as a theory not reflected in practice. But can informed consent be simply dismissed as insubstantial? Can it reasonably be claimed that the introduction of informed consent has made no difference whatsoever in the doctor–patient relationship and that everything is “business as usual”? Does the fact that the doctor is still the one calling the shots mean that the way in which medical decisions are made under conditions of informed consent is the same as before informed consent? These are important questions that the standard critique of informed consent is not prepared to answer because it tends to focus on what informed consent does not do (i.e. “it does not promote real patient involvement and choice”), rather than on what informed consent does do. Informed consent is, after all, a routine aspect of modern clinical practice that shapes the roles of physicians, patients, and their families, as well as the interactions among them. There is, furthermore, a whole institutional edifice built around the notion of informed consent (e.g. the consent form, the power of attorney and the advance directive, among others) that gets mobilized every day and that has become an integral part of the process of clinical decision-making. That is, informed consent is, in Max Weber’s terms, a “valid order”:

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The subjective meaning of a social relationship will be called an “order” only if action is approximately or on the average oriented to certain determinate “maxims” or rules. Furthermore, such an order will only be called “valid” if the orientation to such maxims includes . . . the recognition that they are binding on the actor or the corresponding action constitutes a desirable model for him to imitate. (1997, 124) Given these facts, we may now pose the question: what does medical care look like under conditions of informed consent, and what are its implications? This is a question best answered by grounding the analysis in actual medical practices, which can show how informed consent works “on the ground.” This is why we now turn to the analysis of how informed consent has shaped medical care and decision-making at the end of life.

Patient autonomy at the end of life While there is in Canada and the United States a general recognition of a person’s right to self-determination, the question of whether a person has a right to choose to die has been answered only ambiguously. This ambiguity is seen in the legal regulation of medical practice in situations when patients, due to extreme suffering, express a desire to die. In Canada, for example, while suicide is not itself illegal, helping a patient commit suicide is a criminal offence punishable with prison.9 In other words, the criminal code keeps patients from lawfully receiving help to end their lives because no one is “entitled to consent to have death inflicted on him [sic], and such consent does not affect the criminal responsibility of any person by whom death may be inflicted on the person by whom consent is given” (Criminal Code of Canada 1985, c. C–46 s 14). There are, however, situations in which doctors and patients are legally allowed to treat death as a matter of patient choice and autonomy. Unlike the case of physician-assisted suicide, which in Canada falls under the jurisdiction of the Criminal Code, these other situations are framed by the common law on consent and the right it grants individuals to refuse unwanted medical treatment, even in cases where this refusal entails the withdrawal and/or withholding of life-sustaining treatments and is likely to bring about death. In other words, certain patients may legally choose to die by choosing to refuse medical treatment. In the United States, this principle of individual self-determination in relation to death was established by Cruzan by Cruzan v. Missouri Department of Health, a landmark Supreme Court case decided in 1990. This case focused on the situation of Nancy Cruzan, a young woman who lay unconscious in a Missouri hospital as a consequence of a 1983 car accident, and the conflict that had emerged between Cruzan’s family and the hospital where she was receiving care. Cruzan’s parents had for many years tried to get the hospital to remove the feeding tube that kept their daughter alive. They had argued that their daughter had no chance of recovery and that she would not have wanted to live “like a vegetable.” The

36 Diego Llovet decision to request the removal of the feeding tube (and their daughter’s ensuing death) was, in the parents’ view, in accordance with Nancy’s personal values. In their own words: The decision to stop treatment and allow a loved one to die is one of the most difficult decisions a family can face. However, because of our lifelong shared love with Nancy and our understanding of her values, we concluded that we had no choice but to try to set her free from this hopeless condition she is trapped in. Not to do so would be to disregard the very meaning of Nancy’s “lived” life. (quoted in Belkin 1990) The hospital had denied the parents’ initial request (given that it would result in the patient’s death) and as a consequence the Cruzans sought and obtained a court order directing the hospital to remove the tube. The hospital, with the backing of the state’s Attorney General, appealed the ruling to the Missouri Supreme Court. This court reversed the order, arguing that state law strongly favored the preservation of life and therefore placed limits on the patient’s right to refuse treatment, if such refusal is likely to cause death. Reporting on the decision, the St. Louis Dispatch said: Under the law, state residents may make a “living will” saying that they do not want their lives prolonged by medical treatment if they have a fatal illness and become incompetent. But in the opinion, the court differentiated between treatment and feeding, saying “common sense tells us that food and water do not treat an illness, they maintain a life.” Robertson [the Justice writing the opinion of the court] wrote that neither the right to refuse treatment nor the right of privacy was absolute and that each must be balanced with the state’s interest in preserving life. (1988, 1A) The Cruzans appealed and the case landed before the US Supreme Court. The US Supreme Court upheld the Missouri Supreme Court ruling, saying that the state had a right to demand “clear and convincing evidence” of Nancy Cruzan’s wishes, which the parents had failed to provide (according to the state’s Supreme Court). However, the US Supreme Court disagreed with the Missouri court’s opinion that a person’s right to refuse treatment is qualified by other interests—in this case, the interest in the preservation of life. Citing the Fourteenth Amendment, which states that a person may not be deprived of life, liberty, or property without due process of law, the US Supreme Court argued that competent individuals have a constitutionally protected right to liberty that allows them to refuse any unwanted medical treatment, including lifesaving hydration and nutrition (Cruzan by Cruzan 1990, 278–80). In Canada, the right to individual self-determination vis-à-vis the refusal of unwanted life-saving treatments has also been secured by the courts. Only three years after Cruzan, the Supreme Court of Canada stated that:

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Canadian courts have recognized a common law right of patients to refuse consent to medical treatment, or to demand that treatment, once commenced, be withdrawn or discontinued. (Ciarlariello v. Schacter [1993] 2 S.C.R. 119). This right has been specifically recognized to exist even if the withdrawal from or refusal of treatment may result in death [Nancy B. v. HôtelDieu de Québec (1992), 86 D.L.R. (4th) 385 (Que. S.C.); and Malette v. Shulman (1990), 72 O.R. (2d) 417 (C.A.)]. (Rodriguez v. British Columbia (Attorney General) 1993, 94) Moreover, both the American Medical Association (AMA) and the Canadian Medical Association (CMA) have also recognized the rights of patients to reject life-sustaining treatments. They do so in the official policies currently governing medical practice in those two countries. Our AMA believes that: (1) The principle of patient autonomy requires that physicians must respect the decision to forgo life-sustaining treatment of a patient who possesses decision-making capacity. Life-sustaining treatment is any medical treatment that serves to prolong life without reversing the underlying medical condition. Life-sustaining treatment includes, but is not limited to, mechanical ventilation, renal dialysis, chemotherapy, antibiotics, and artificial nutrition and hydration. (American Medical Association 2010) A competent person has the right to refuse, or withdraw consent to, any clinically indicated treatment, including life-saving or life-sustaining treatment. (Canadian Medical Association 1995, 2) In this context, the patient is defined as an autonomous agent, whose decisions, including the decision to be allowed to die, cannot be overridden by anyone else. But, as the case of Cruzan (and earlier, that of Karen Quinlan10) shows, the patient can be unconscious or otherwise incapable of deciding whether to accept or forego life-saving and/or life-sustaining treatments. This condition, legally called “incompetence,”11 is common among certain types of patients such as older persons with dementia, persons with other terminal conditions, and persons in intensive care units. How, then, can the incompetent patient make decisions for him or herself? How can an incompetent patient be “autonomous”? In the US, this question was raised in particular in relation to the use of medical technologies (the feeding tube is but one example of this) that kept gravely ill patients alive but unconscious for long periods of time. Starting in 1976 (Silveira, Kim, and Langa 2010), many states in the US started passing legislation allowing documents called “advance directives,” which patients could use to either designate someone else to make decisions for them if they were to become incapable, or to convey the wishes and decisions with respect to life-sustaining treatment that they would like implemented should they themselves become unable to communicate

38 Diego Llovet them in the future. And almost immediately after Cruzan, Congress passed a federal law called the Patient Self-Determination Act, which further established advance directives in the clinical setting by mandating, among other things, that all federally-funded hospitals record a patient’s choice regarding life support treatments upon admission (New York Times 1990). With the assistance of these legal means,12 it was expected that patients would be able to regain control over clinical decisions and to make their own choices regarding life and death in a situation of incapacity. In the Canadian province of Ontario, a similar principle applies, and patients may also use advance directives to refuse unwanted life-saving treatments when incompetent. In 1991, the Ontario Court of Appeal said: A patient, in anticipation of circumstances wherein he or she may be unconscious or otherwise incapacitated and thus unable to contemporaneously express his or her wishes about a particular form of medical treatment, may specify in advance his or her refusal to consent to the proposed treatment. A doctor is not free to disregard such advance instructions, even in an emergency. The patient’s right to forgo treatment, in absence of some overriding societal interest, is paramount to the doctor’s obligation to provide medical care. This right must be honored, even though the treatment may be beneficial or necessary to preserve the patient’s life or health, and regardless of how ill-advised the patient’s decision may appear to others. (Fleming v. Reid 1991; quoted in the End of Life Project’s website) This court-established notion of the need to respect the autonomy of the incompetent patient is affirmed in the Ontario Health Care Consent Act of 1996 in the figure of the “substitute decision maker.” These are persons designated to make decisions for the incompetent patient, decisions that the physician is obligated to follow. The law, which lays down the rules for appointing the substitute decision maker, tends to reserve this role for relatives of the patient.13 Section 20(1) of the Act gives a list of persons who may give or refuse consent, as follows: 1 2 3

4 5

The incapable person’s guardian of the person, if the guardian has authority to give or refuse consent to the treatment. The incapable person’s attorney for personal care, if the power of attorney confers authority to give or refuse consent to the treatment. The incapable person’s representative appointed by the Board under section 33, if the representative has authority to give or refuse consent to the treatment. The incapable person’s spouse or partner. A child or parent of the incapable person, or a children’s aid society or other person who is lawfully entitled to give or refuse consent to the treatment in the place of the parent. This paragraph does not include a

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parent who has only a right of access. If a children’s aid society or other person is lawfully entitled to give or refuse consent to the treatment in the place of the parent, this paragraph does not include the parent. A parent of the incapable person who has only a right of access. A brother or sister of the incapable person. Any other relative of the incapable person. (Health Care Consent Act 1996, c. 2, Sched. A, s. 20(1))

While the substitute decision maker is given the authority to make healthcare decisions on behalf of the incompetent patient, this authority does not give the person the freedom to make just any decision he or she likes. Indeed, the law establishes rules according to which decisions may be made on behalf of the patient. The Health Care Consent Act says: Principles for giving or refusing consent: 21. (1) A person who gives or refuses consent to a treatment on an incapable person’s behalf shall do so in accordance with the following principles: 1

2

If the person knows of a wish applicable to the circumstances that the incapable person expressed while capable and after attaining 16 years of age, the person shall give or refuse consent in accordance with the wish. If the person does not know of a wish applicable to the circumstances that the incapable person expressed while capable and after attaining 16 years of age, or if it is impossible to comply with the wish, the person shall act in the incapable person’s best interests. (1996, c. 2, Sched. A, s. 21(1))

Best interests (2) In deciding what the incapable person’s best interests are, the person who gives or refuses consent on his or her behalf shall take into consideration, (a) the values and beliefs that the person knows the incapable person held when capable and believes he or she would still act on if capable; (b) any wishes expressed by the incapable person with respect to the treatment that are not required to be followed under paragraph 1 of subsection (1); and (c) the following factors: 1

Whether the treatment is likely to, i ii

improve the incapable person’s condition or well-being, prevent the incapable person’s condition or well-being from deteriorating, or iii reduce the extent to which, or the rate at which, the incapable person’s condition or well-being is likely to deteriorate.

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Whether the incapable person’s condition or well-being is likely to improve, remain the same or deteriorate without the treatment. Whether the benefit the incapable person is expected to obtain from the treatment outweighs the risk of harm to him or her. Whether a less restrictive or less intrusive treatment would be as beneficial as the treatment that is proposed. (1996, c. 2, Sched. A, s. 21(2))

As it is clear from these rules, the law gives absolute precedence to patient selfdetermination, as substitute decision makers are required to follow the wishes that the patient declared to have when still competent. That is, the substitute decision maker is required to “follow orders” and simply execute the will of the patient. Whether substitute decisions makers or doctors think this is a good or a bad decision is, from the point of view of the law, irrelevant. This is an example of how patients may direct their substitute decision makers through a template of a Power of Attorney for Personal Care offered by a local law firm: The following are my instructions to my Attorney(s) and my wishes with respect to the giving or refusing of consent to specified kinds of treatment under specified circumstances: If at any time I should have an injury, disease or illness which results in severe physical or mental disability from which my physician considers there is no reasonable expectation of either a substantial recovery or a substantial improvement in the quality of life from that then being experienced by me as a result of such disability, I direct that I be kept alive no longer than 90 days by medications, artificial means or “heroic measures” and then be allowed to die, and I direct that any such medications, means or measures that would keep me alive in those circumstances be withheld or withdrawn. (Campbell n.d., 8) However, the literature (Perkins 2007; Fagerlin and Schneider 2004; Salmond and David 2005) reports that many people, if not most, fail to leave instructions before becoming incompetent. How is the substitute decision maker expected to decide for the patient in such a situation? In those cases, the Health Care Consent Act directs substitute decision makers to decide based on the patient’s “best interests.” These are defined as the product of the combination of three elements: the patient’s general values and beliefs, any relevant wishes expressed by the patient when capable, and a consideration of whether or not the treatments being chosen are likely to improve the “condition or well-being” of the patient. Here, again, we see the law’s emphasis on patient self-determination: in the absence of instructions by the patient, substitute decision makers are still compelled to make a decision based on their understanding of the patient’s general philosophy of life (his or her values and inclinations) and its relation to health and well-being. Here, substitute decision makers are not merely executing an instruction given beforehand; they are, instead, expected to use their imagination to figure out what

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decision the patient him or herself would have made in this or that situation and to base their decision on this hypothetical understanding. According to the law, the substitute decision maker sees the situation through the eyes of the patient, not his or her own, and so any decision made on behalf of the patient is the patient’s will expressed by a third party. The substitute decision maker is in this context nothing less (and nothing more) than the one who conveys to the medical team the unadulterated will of the patient.

The consent and capacity board: in defense of patient autonomy The law thus manages to create conditions for patient autonomy, even under conditions of incompetence and lack of instructions. But the law also knows that this is a frail accomplishment, since it hinges on the substitute decision makers’ ability and desire to meet their obligation to make decisions that faithfully reflect the will of the patient. In other words, the law anticipates that some decision makers will, for whatever reason, fail to do “what the patient would have wanted.” It is because of this that the Health Care Consent Act establishes that all decisions made by proxies are subject to challenge, review, and correction by the Consent and Capacity Board. This is an independent provincial tribunal14 composed of lawyers, psychiatrists, and members of the public with a mandate to protect the “dignity and autonomy of the individual” and his or her right to choose “whether to take treatment” (Consent and Capacity Board 2010a, 2). Section 37 of the Act says: Application to determine compliance with s. 21 37. (1) If consent to a treatment is given or refused on an incapable person’s behalf by his or her substitute decision-maker, and if the health practitioner who proposed the treatment is of the opinion that the substitute decision maker did not comply with section 21, the health practitioner may apply to the Board for a determination as to whether the substitute decision-maker complied with section 21. (1996, c. 2, Sched. A, s. 37(1)) [...] Power of Board (3) In determining whether the substitute decision-maker complied with section 21, the Board may substitute its opinion for that of the substitute decision-maker. (1996, c. 2, Sched. A, s. 37(3)) Note here that the law relies on the physician to guard and protect the autonomy of the patient, as doctors are given powers to police the actions of substitute decision makers and to challenge those decisions that are thought to violate the patient’s will. In cases where it is suspected that proxies are not complying with the law,

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and where there is disagreement regarding treatment between proxies and physicians, physicians can use a “Form G: Application to the Board to determine compliance under subsection 37 (1), 54 (1), or 69 (1) of the Act” (2005a), which leads to a review by the Consent and Capacity Board. By means of an information sheet, the Board stresses the protective role of the professional caregiver in this process: [Substitute Decision Makers] are required to follow the principles set out in the Health Care Consent Act. A health practitioner . . . may believe that an SDM is not following these principles. If this happens, that person may apply to the Board for a determination as to whether the principles have been followed and for an order to the SDM to comply with the Act. Use of this application is limited to the health care provider of the incapable person (e.g. family members cannot apply to the Board). (Consent and Capacity Board 2005a, 2; emphasis in the original) While Form G itself is brief and collects only basic information such as names and addresses of the physician and the substitute decision maker, caregivers filing an application to the Board may also use and attach a summary form (Consent and Capacity Board, 2010b) where they can make their case with more detail. This summary form includes things like diagnosis, prognosis, treatments proposed by the physician, and position of the substitute regarding this treatment—which is assumed to be one of disagreement, given that the application is being filed. The summary form further enquires as to whether the patient has granted anyone a power of attorney for personal care, whether the patient had any wishes that are applicable to the circumstances, and if not, whether the treatment that the physician proposes serves the “best interests” of the patient, as defined in the Act. Once a Form G is filed and accepted, the case is referred for a hearing to the Consent and Capacity Board, which acts as a forum where doctors and families compete with each other to assert their right to represent the needs and interests of the patient as an autonomous person. Hearings always begin with an assessment of whether the patient is indeed incompetent, a ritual that confirms that the representation of the patient is, in fact, up for grabs. Having established the incompetence of the patient, family and physician are invited to present their cases and a decision is made by the members of the Board based on this evidence. The family is first invited to explain to the Board how it is that they came to refuse the treatment proposed by the doctor, and how this refusal is in accordance with the patient’s will. And subsequently, the physician making the application is asked to explain to the Board why he or she believes that the family’s decision is, in fact, contrary to the will of the patient, and to provide an alternative account of “what the patient really wants.” In order to track this contest between medicine and the family over who is best suited to represent the will of the patient, we can turn to the transcripts of five decisions by the Consent and Capacity Board. These five cases all happened in

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Ontario and fell under the Consent and Capacity Board’s jurisdiction. Hearings for these cases are fairly recent and were conducted between October, 2003 and September, 2007. With one exception, they all involve older adults between the ages of 78 and 90. The exception was an 8-month-old baby who had suffered oxygen deprivation at birth and was left in a vegetative state. All patients had had relatively lengthy hospital stays. In all cases, doctors had proposed courses of treatment that reflected their diagnosis that the patient had entered the dying process and that it was time to “let them go.” These courses of treatment included, depending on the case, a refusal to admit the patient to the intensive care unit in case of cardiac arrest or septic shock; the implementation of “do not resuscitate” orders;15 the withdrawal of forced ventilation; and the stopping of artificial nutrition and hydration. In all cases, relatives of the patients (sons, daughters, and parents) rejected these recommendations made by doctors and demanded that everything be done to keep their loved ones alive.16 In its decisions, the Board summarized the families’ reasons for refusing consent: Mrs. H.J.’s daughters, Mrs. C.M. and Ms. R.J., were her substitute decisionmakers. They disagreed with the doctors. They said their mother lived by the slogan, “Where there’s life, there’s hope.” Mrs. C.M. and Ms. R.J. interpreted that to mean that all available measures should be employed to keep Mrs. H.J. alive. They would not authorize the doctors to do anything but continue to save their mother. (Consent and Capacity Board 2003, 2) Mr. DeRose [the family’s lawyer] met Mr. G.A. [the patient] the evening before the Hearing . . . [The lawyer asked the patient a few questions and] concluded that Mr. G.A. wanted whatever was necessary to keep him alive, wanted to go home and did not want to die. (Consent and Capacity Board 2007a, 9) The first consideration for the S.D.M was the values and beliefs that she knew the patient held when capable. The family members all referred to their mother’s statements over their life to not give up and to be a fighter. The S.D.M appeared to take those general statements as a requirement that no action should be spared in trying to preserve life. (Consent and Capacity Board 2005c, 10) Mrs. G and Mr. G did not dispute their son’s condition but said that God would heal him. Mr. G cited many passages in the Bible from which he drew, not only comfort, but also support for the prospect of divine intervention. Mr. G also said that medical science would eventually find a cure for E.J.G.’s condition so there was reason to keep him alive until that happened. (Consent and Capacity Board 2007b, 11)

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Diego Llovet Mr. J.S. thought his mother would want nutrition and hydration continued and based that upon his view of the family value system, which he described as including the value to “live, struggle and do your best.” (Consent and Capacity Board 2007c, 8)

The Board assessed these arguments in light of other evidence it had collected and in each case it decided against the families, noting that their statements could not reasonably be taken to represent the will of the patients on whose behalf they were deciding. In two cases, patients had written living wills in which they had requested the withholding or withdrawal of life-saving or life-sustaining measures in the event that they became, in the opinion of their doctors, terminally ill. While the families here claimed that these instructions were not valid or did not apply, the Board upheld the wills and said that these documents faithfully reflected a decision made by the patient and that it therefore needed to be honored. The Board said of these living wills: We are recognizing . . . the presumed validity of a legal document executed in the presence of a lawyer and the importance of respecting clearly expressed wishes made by a capable person in a document designed for exactly that purpose . . . [N]one of Mr. G.A.’s three children who gave evidence ever talked to Mr. G.A. about his treatment wishes. When they said, for example, “He would want everything done,” they were at best making assumptions that flew in the face of what Mr. G.A. expressed in writing [in his living will]. We also observed that none of these three witnesses distinguished between what they wanted and what they thought Mr. G.A. wanted. (Consent and Capacity Board 2007a, 14) In regard to these two cases, the Board suggested that the families were in denial and that they had refused to honor the living wills because they had not been able to come to terms with the fact that their loved one was dying. Asked specifically . . . Dr. Dwosh [the physician] said he thought [the family was] . . . making a wrong decision. He did not think they were unable to understand relevant information or unable to appreciate likely consequences, but rather refused to accept the seriousness of Mr. G.A.’s condition. In his consultation report . . . Dr. Dwosh wrote [that it was] clear that [they were] having a difficult time coping with (Mr. G.A.’s) acute illness. (Consent and Capacity Board 2007a, 6–7) While Mr. J.S. [the substitute decision maker] testified with great dignity, it was clear to us that he was not ready to accept his mother’s condition. Mr. J.S. could not reconcile his views of Mrs. K.M.S.’s broad life values, as he described them, with what she directed in her Power of Attorney. He conceded the obligation, as one of his mother’s Attorneys, to honour her direction but searched for reasons to delay and deny. (Consent and Capacity Board 2007c, 12)

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In the other three cases, the patients had not declared any explicit wishes (in the form of a living will or otherwise) and the arguments before the Board revolved around the notion of how the values and beliefs of the patient would have guided treatment decisions. In two of these cases, the Board rejected the relatives’ representations of the patients by saying that those values and beliefs were too general and should not be applied mechanically, without regard for the patient’s condition. In the third of these cases, the Board rejected the family’s argument by saying that the belief used to justify refusing consent was one held by the family, not by the patient. This was so because the patient was an 8-month-old baby who was in a vegetative state and could therefore not have formed any values. There were no conversations between Mrs. H.J. and the substitute decisionmakers she appointed regarding end of life decisions beyond, “Where there’s life there’s hope.” That phrase, noble by which to live, was in our view too general . . . to be considered a directive applicable no matter what. Using the words of . . . Conway v. Jacques, “prior capable wishes are not to be applied mechanically or literally without regard [for] . . . circumstances. Even wishes expressed in categorical or absolute terms must be interpreted in light of the circumstances prevailing at the time the wish was expressed.” (Consent and Capacity Board 2003, 16–17) We accept that the patient told her children never to give up. Encouraging perseverance and determination is something that most parents do. There was never any discussion between the patient and her children as to what the general admonition to not give up might mean in the context of the circumstances that she was now in. Did Ms. P. believe that not to give up extended to performing CPR on an unconscious person whose organs were shutting down? (Consent and Capacity Board 2005c, 10) We were aware that instances of miraculous cures and divine intervention have been reported throughout history. [However], we concluded that E.J.G.’s treatment decisions ought not be based on the hope of another miracle. Capable people, or people who lived long enough to formulate their own values and beliefs before losing capacity, might make or have made on their behalf, a treatment decision based on belief in the prospect of divine intervention. However, that would be their decision directly or based upon their values and beliefs, not a decision based upon the faith of their substitute decisionmakers. (Consent and Capacity Board 2007b, 18) In sum, the Board sees these families as a threat from which the patient needs to be protected. In principle, the law believes that relatives make good substitute decision makers because they are close to the patient and having this personal

46 Diego Llovet knowledge allows them to more faithfully represent and protect the interests of the sick. But at the same time, as the Board decisions show, the intimacy of the relation is itself reason for suspicion: relatives can have their judgment “clouded” by emotion or confusion, leading them to make the “wrong” decision and to infringe upon the autonomy of the patient. Because of this, the Board believes these families should not be permitted to speak for the patient.

Medicine’s representation of the patient’s desire to be allowed to die In such situations, the Board turns to the doctors for a more “reliable” account of what the “true” interests of the patient are. Speaking as advocates for the ill, physicians will explain to the Board why, contrary to the claims made by the families, these patients would, if competent, choose to be allowed to die. In order to prove this, physicians develop a narrative that connects the patient’s medical situation with the desire to be allowed to die. This narrative has distinct moments, the first of which is the presentation of the patient as being in “bad shape.” Doctors enumerate a series of dire conditions. Mrs. H.J.’s life expectancy was six months to a year, less if she suffered another cardiac arrest or serious infection . . . [She] . . . was bedridden . . . [and] suffered from Alzheimer’s Disease. . . . It destroys the brain and is ultimately fatal one way or another. [This] was one of the most severe cases [the doctor] had ever seen . . . Mrs. H.J. could not . . . communicate . . . [She required] a “J” tube for feeding. (Consent and Capacity Board 2003, 2, 4, 5) Ms. P. had had a major stroke about three years ago and she had a major cognitive deficit . . . Ms. P’s . . . organ systems were shutting down. She was malnourished. Her platelet count was continuing to drop and she required transfusions. She did not have muscle function. Her kidneys were operating at 20 percent of normal. She was on a ventilator. She had had a tracheotomy. She was being fed through a tube inserted into her stomach. Ms. P. was unconscious . . . She required frequent rotation in her bed because of bed sores. (Consent and Capacity Board 2005c, 6) The narrative then continues with medicine’s reflection on the difference that medical science can make in such extreme cases. Reflecting on the treatments applied to their patients, doctors inevitably came to the conclusion that these medical interventions were useless because they failed to produce adequate results. Patient H.J., for example, had been treated with antibiotics for a series of infections, which became increasingly resistant to drugs and therefore impossible to defeat. Patients P. and K.M.S., for example, could not absorb the nutrients provided by their feeding tubes and became debilitated. In all cases, doctors identified one or more “irreversible” and “unbeatable” conditions in their patients and in 4 out

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of 5 cases they reported that the patient’s overall health was quickly spiralling down. In their view, medical interventions could only improve the patient’s condition to a lower base point of health. These patients were terminally ill and without hope of cure or improvement. [The] Dr. testified there would be no good news . . . Mrs. H.J.’s prognosis was certain. Timing was the only question. Certainly, there could always be hope but for Mrs. H.J. it was sadly scant. Mrs. H.J. was inexorably approaching death’s cold door and already within reach of knocking on it. (Consent and Capacity Board 2003, 19) [The] Drs. were both adamant that E.J.G.’s brain condition was irreversible and untreatable. He would not get better. (Consent and Capacity Board 2007b, 10) However, the argument was not that treatment was medically innocuous, given the patients’ conditions. In other words, the argument was not that treatment did not make any difference. To the contrary, a major point that doctors made systematically and forcefully throughout their expert testimony before the Board was that the treatment administered to patients to keep them alive was, in fact, harmful. Doctors construct this notion of “harm to the patient” by talking in detail about what they call “the burden of treatment,” that is, the pain, discomfort, and undermining consequences associated with certain kinds of medical interventions. Patient H.J.’s physician, for example, explained that the suctioning of lungs made breathing harder, that the intravenous administration of drugs and other substances opened avenues for new infections, and that forced ventilation radically debilitated the patient. Patient G.A.’s doctor stated that applying cardio-pulmonary resuscitation required breaking at least a few of the patient’s ribs and elaborated on the problems associated with stays in the intensive care unit (ICU). In particular, he mentioned “ICU delirium,” which is the patient’s inability to concentrate due to ongoing interruptions of the sleep cycle caused by permanent medical activity in the ward.17 Patient K.M.S.’s physician said that staying in bed, something inevitable with these patients, favored the formation of bedsores and the outbreak of infections. The same doctor explained how tube feeding damaged the patient’s airways and could produce pneumonia. Patient E.J.G.’s doctor told of hospitalborne infections and complications arising from the use of assisted ventilation. Below is an example of this talk. [The] Dr. said of chest compression for resuscitation, “At Mr. G.A.’s age, if you’re not breaking ribs, you’re not pushing hard enough.” (Consent and Capacity Board 2007a, 6) [T]reating any of her symptoms resulted in additional symptoms and risks . . . “cascading” health problems. Mrs. K.M.S. contracted pneumonia, but the antibiotics used to treat it led to a bowel disruption as a result of which

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Diego Llovet Mrs. K.M.S. contracted C. difficile, which led to diarrhea, which led to the breakdown of skin around her rectum, which was likely to result in bed sores. (Consent and Capacity Board 2007c, 5)

This notion that the patient is being “harmed,” however, does not come from the fact that the patient is, objectively speaking, in pain. After all, pain and suffering are normal and necessary occurrences in medical practice (think, for example, of surgery). Instead, the notion of patient harm is grounded, as these cases show, in the assessment that treatment is “not beneficial” to the patient. The category of “non-beneficial treatments,” it should be noted, is not limited to interventions that bring absolutely no progress to the patient (such as performing CPR on a dead person). Instead, it contains as well a range of measures that may have a direct and favorable impact on the patient’s physiological state but that are declared to be insufficient to warrant their application, according to some standard. Doctors use the notion of “non-beneficial treatment” (also called “futile”) to distinguish between interventions worth pursuing from those that are not. And this distinction is made by taking into consideration the “costs” and the “returns” of particular medical interventions. A recurrent example in these cases is the use of CPR and ventilators on patients. The argument is often that these technologies, while having the potential of saving or maintaining the patient’s life, also mean that the patient’s survival will take place under conditions of intensive and chronic hospital care, never free from discomfort and machines. “Harm” only happens if the pain that medicine inflicts on the patient as part of treatment does not yield results that doctors can deem satisfactory. Here, cost-benefit analysis in action. “Benefit,” as used in this paragraph of the legislation, to us meant balancing the good results with the bad results, what [the] Dr. referred to throughout the Hearing as “the burdens of treatment.” The burdens of treatment included pain, discomfort and loss of dignity, factors that went into the equation of “benefit.” The good result was prolonging Mrs. H.J.’s life, although not everyone might see that as a good result for her, given her overall condition. (Consent and Capacity Board 2003, 22) To medicine, the fact that these patients’ cost-benefit equations yielded a negative result (that is, the costs were higher than the benefits) meant not that nothing could be done to save the patients’ lives. Instead, it meant that nothing should be done to keep them alive. This conscious estimation made by doctors is, in other words, a matter of value—not a matter of science. This inherently moral estimation is grounded in medicine’s understanding of human dignity and the profession’s duty to protect and preserve a dignified existence for its patients. While certain treatments do involve a degree of patient suffering and humiliation (think of a colonoscopy as a case of the latter), suffering and humiliation become ethical infractions perpetrated by medicine when painful and humiliating procedures are known to not have medically “acceptable” results. When a patient is labeled as “dying,” medicine seeks to ban a series of treatments that are seen as an affront

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to human dignity for their high costs and low returns, treatments that may give patients a few more days of life but only at the expense of whatever “quality of life” and “well-being” they have left. To let the patient die is to help the patient preserve his or her dignity. That is, dignity is introduced as a justification to intervene—it makes such an intervention a lawful and a necessary one. [The doctor] said that the ICU staff felt that Ms. P. had a right to her dignity such that if her heart failed she should be allowed to die. (Consent and Capacity Board 2005c, 7). [The physicians] said E.J.G. was suffering even if he could not feel pain or discomfort . . . [The doctor] distinguished between pain, which E.J.G. could not feel, and suffering, which she described as something E.J.G. might endure in an existential sense in response to invasive but futile procedures . . . In determining E.J.G.’s well-being, we were entitled to consider the constant invasions and humiliations to which his inert body was subject. At some point those factors overrode the presumption in favor of continuing life. (Consent and Capacity Board 2007b, 11, 22) The relevant subsection [in the law] is s.21 (2) (c) 1 ii. “Will the treatment prevent the incapable person’s condition or well-being from deteriorating? Clearly in the event of heart failure not resuscitating will lead to death so it cannot be said that her condition will be prevented from deteriorating with a DNR order. However, if well-being is interpreted broadly to mean the patient’s dignity and quality of life then a DNR order could prevent a deterioration.” (Consent and Capacity Board 2005c, 11; emphasis in the original) In medicine’s view, failure to avoid non-beneficial treatments for “dying” patients would lead the doctor to condemn the patient to a sort of living death, a life not worth living. This type of existence consists of a reduction of the “full” human being to “mere life” via the use of available medical technology—a reduction to mere, meaningless biological life. The image is one of an inert, unconscious body, bedridden, connected to machines that feed and breathe for the patient. Medicine here makes a distinction between “mere” physiological activity that corresponds to parts and organs of the body, on the one hand, and the overall ability of the person to function in the world as a biological and social entity, on the other. “The physician’s goal,” claim renowned critics of nonbeneficial treatment (Schneiderman, Jecker, and Jonsen 1996, 670), “is not merely to affect some part of the body but to benefit the patient as a whole.” Medicine is here distinguishing between the patient as a collection of bodily parts that can be affected individually through treatment (a liver here, a heart there), and the patient as a “whole person.” With this formulation, medical science rejects the treatment of the person as “just a body” and seeks to ground its

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relations with patients in humanism instead of technocracy and detailed anatomical and physiological knowledge. We thought “well-being” involved more than mere life itself. The phrase is subjective as used [in the law] because it [is] used in conjunction with the word “condition,” which connoted to us a more objective assessment of the status of a person’s illnesses and physical situation. “Well-being” includes considerations such as the person’s dignity and levels of pain. (Consent and Capacity Board 2003, 20) However, the dignity and well-being of the patient is not the only reason used to reject the families’ requests to continue life-saving and life-sustaining treatment. In these cases, doctors argued that their own integrity and humanity was jeopardized as well, given that they would be morally responsible for inflicting unnecessary pain on the dying patient. A recent Canadian case (CTV News 2007 and 2008) reflects this anxiety of medicine regarding the infliction of pain. Samuel Globchuck, 85, an Orthodox Jew living in Manitoba who was in an intensive care unit, was at one point deemed by doctors to have no chance of recovery. Given this prognosis, doctors suggested that he be disconnected from his ventilator, a proposal that Globchuck’s family rejected due to religious reasons. The hospital insisted and the family responded by going to court and winning a temporary injunction, which the hospital then tried to appeal. Eventually, Globchuck died without the hospital’s intervention, the way the family had wanted. From medicine’s point of view, to preserve life in this situation was tantamount to torture, an activity that doctors should never engage in. In fact, this is why Globchuck’s “doctors resigned their privileges at the hospital’s intensive care unit” (Lambert 2008). In a 1995 article published in the Journal of Contemporary Health Law and Policy, law professor George Smith echoed this line of argument by saying that obligating doctors to provide non-beneficial treatment to dying patients is equivalent to “cruel and unusual punishment” of prisoners,18 prohibited by the US Constitution. Non-beneficial treatment is then associated with the doctor’s violation of the “do no harm” principle that is said to ground good medical education. Reporting on the Globchuck case, medical ethicist Peter Singer (2007) suggested that so-called futile cases (of which the five cases analyzed in this chapter are examples) can be difficult for healthcare teams because they feel that they are being forced to act against their sense of professional values. Seeing the patient suffer needlessly, doctors and nurses suffer, too. In this manner, the physician becomes, along with the dying patient, a victim of the family’s unreasonable expectations. The Board illustrates this point in its decision regarding Patient P.: [The clinical manager] thought that the patient was experiencing pain. Her ICU staff had had to go for counselling as they were upset that they would be required to do CPR given the patient’s medical condition. (Consent and Capacity Board 2005c, 7)

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In all five cases, the Consent and Capacity Board accepted the doctors’ accounts and it ordered families to consent to the treatments being proposed by the physicians.19 The Board thus uses its legal powers to free patients from the “tyranny” of familial misrepresentation and to grant medicine authority to lawfully speak for the patient. In this manner, patients find in the medical expert their true, “autonomous” voice.

Informed consent redux: implications for care In the original informed consent cases, patients were presented as victims of medical paternalism, and the doctrine of informed consent was introduced to allow patients to make their own decisions while imposing limits on medicine’s ability to act unilaterally. The conflict was then between patients and doctors, where doctors were presented as enemies of patient autonomy. In these original conflicts, the family acted as an ally of the patient (see Cruzan and Quinlan). Families brought these cases forth and demanded that doctors step back. But even in these landmark cases, the family’s status was ambiguous, since the courts recognized that the right at stake was that of self-determination. This right belonged to the patient, not to the family. The US Supreme Court indicated its suspicions in this regard when it ruled that the Missouri Supreme Court was right to demand proof of Cruzan’s wishes before allowing her parents to remove her feeding tube. No doubt is engendered by anything in this record but that Nancy Cruzan’s mother and father are loving and caring parents. If the State were required by the United States Constitution to repose a right of “substituted judgment” with anyone, the Cruzans would surely qualify. But we do not think the Due Process Clause requires the State to repose judgment on these matters with anyone but the patient herself. Close family members may have a strong feeling—a feeling not at all ignoble or unworthy, but not entirely disinterested, either—that they do not wish to witness the continuation of the life of a loved one which they regard as hopeless, meaningless, and even degrading. But there is no automatic assurance that the view of close family members will necessarily be the same as the patient’s would have been had she been confronted with the prospect of her situation while competent. All of the reasons previously discussed for allowing Missouri to require clear and convincing evidence of the patient’s wishes lead us to conclude that the State may choose to defer only to those wishes, rather than confide the decision to close family members. (Cruzan by Cruzan 1990, 287–8) This same ambivalence toward the family was transferred into Ontario’s Health Care Consent Act of 1996, which makes room for family participation while setting up mechanisms to evaluate, challenge, and even revoke the family’s representation of the patient. The five cases show how this emphasis on patient autonomy and the suspicious character of the family translate into an opportunity for medicine

52 Diego Llovet to take over the representation of the patient and to accuse the family of infringing on the patient’s right to self-determination. In this manner, the defense of patient autonomy, a central goal of informed consent, serves under current conditions to force a reassignment of roles in which medicine and family trade places, with medicine now defending the patient’s right to self-determination against the family. This represents a dramatic role reversal for medicine and the family, and a particularly useful one for medicine since it can in this way control some of the conflicts that affected its practice and that seemed to get out of hand. If at any point informed consent complaints seemed to threaten medical authority, the full incorporation of informed consent into clinical practice today appears only to enhance it, albeit in a different guise.20 But how can medicine legitimately claim to speak for the patient? Medicine here is up against the family and everything that makes it a preferred substitute decision maker. And yet it defeats the family in the battle for representation. By summoning up a kind of objective attitude, it claims to see the situation “through the patient’s eyes,”21 instead of its own, and to evaluate whether certain types of treatment are actually likely to restore the patient’s health and well-being, where health and well-being are defined through non-medical issues such as the dignity and quality of life, which the patient is supposed to desire. This is, of course, similar to the argument made in just about every landmark case in the history of informed consent, in which health and well-being are conceived in relation to elements that pertain to the individuality of the patient. But in the cases made by doctors before the Board, this connection to the patients’ individuality is lost. No traces are left of the biographies that are supposed to guide treatment decisions. Instead, we see a series of formulas and generic definitions that serve to calculate when a patient is “dying” and to identify those patients who, from the point of view of expert medical knowledge, should be allowed to die. A good example of this is Schneiderman et al.’s definition of medical futility, which uses population statistics to decide individual cases. [W]e propose that when physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of published empiric data) that in the last 100 cases a medical treatment has been useless, they should regard that treatment as futile. If a treatment merely preserves permanent unconsciousness or cannot end dependence on intensive medical care, the treatment should be considered futile. (Schneiderman et al. 1990) The irony here is quite clear: medicine appeals to a notion of humane care by pointing to the dignity of the patient, but this love of humanism and rejection of technocracy are expressed through impersonal and technical methods of measurement and control that are used to decide “what any person in the patient’s position would want.” But perhaps the most striking aspect of this irony is the fact that medicine claims to allow a broader definition of health and well-being by taking into consideration the patient’s life context while shutting out a key

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element of this context: the family and its suffering. The patient is only allowed the context of strictly medical discourse. The appeal to the dignity and autonomy of the individual transforms the patient into an objective, detached being, thus putting him/her back in the hand of medical science and its experts. Medicine then fails to represent the individual patient, but this is no real failure. The profession uses the inert body of the patient to present and enforce its own normative definition of how it believes patients and their families should conduct themselves in critical situations like the ones exemplified by the five Board cases. Just as the medical profession once had its own normative concept of the need to keep patients alive at all costs, as seen in Cruzan and Quinlan, the profession now has a different self-imposed mandate. This new concept indicates that death is a natural and acceptable part of any person’s biography and that allowing death can sometimes be the medically required thing to do. That is, patients in certain circumstances don’t just have a “right to die” (as demanded by the Cruzans and the social movement that they represented); they may, in medicine’s view, have an obligation.22 The five Board decisions reveal the institutionalized expectations (and the sanctions) that shape the modern “sick role” (Parsons 1964) of the dying patient23 as someone who should know “when enough is enough” and who will choose death over life when the time is right. This, however, does not mean that medicine today is no longer committed to the preservation of human life. If anything, the cases under study demonstrate the strength and the currency of this commitment. That is, the change is not in the values of medicine but in the way and the methods in which these values are demonstrated and enforced. In the past, medicine proved its “love of life” in a black and white manner by plainly refusing to let go of the patient. Today, with medicine’s renunciation of the rigid equations of life = good and death = bad, the sanctity of life is upheld in much subtler ways.24 Through the affirmation of the idea that only a healthy life deserves to be lived, medicine today defines certain cases as “exceptions” or “emergencies’” (Agamben 1998; 2005), which allows medical practitioners, “this time only” and “given extenuating circumstances,” to exempt themselves from their professionally mandated obligation to save the life of the patient. With the assistance of the law and the state, the profession institutionalizes the breach of its own ethical commitment. In so doing, it creates a kind of medical practice in which the injunction to let die becomes a celebration of its commitment to life. Ironically, then, informed consent gives medicine more control and authority over the situation of care. But what is the purpose of this authority? What does medicine want to achieve? Key to the story presented in the Board transcripts is a conflict between two characters, one presented as weak, the other presented as strong. The former is the family of the patient, who wants to preserve and prolong the life of the patient, while the latter is the attending physician who wants to terminate treatment and let the patient go. Each represents a different attitude toward medical science and technology. Families, on the one hand, represent the optimistic attitude that progress in science and technology is good because it offers us solutions to pressing human problems such as death. Doctors, on the other hand, represent

54 Diego Llovet a cautious attitude that suggests that technical and scientific progress can actually make things worse. The conflict between antagonist (the family) and protagonist (doctors) in this narrative reveals an opposition of two ways of life, one that medicine is claiming to abandon and the other that medicine is claiming to embrace. The former is the way of life of Enlightenment, which is grounded in a notion of permanent progress that enables us to overcome every problem and limitation that we may happen to experience. It is a way of life that promises that one day we will live free from constraint, restrictions, or necessity and that human agency and capability will expand far beyond the narrow limits imposed on us by the physical environment and our embodied nature. This is what medicine today seeks to repress by teaching families resignation to death. By contrast, medicine now suggests a way of life where limits are recognized, where death is not seen as a problem that needs to be overcome. Instead, death is seen as the natural culmination of biological life, a necessity that cannot and should not be avoided because all life must come to an end. Medicine wants to terminate treatment for the dying patient because this is how it is able to make way for “the end,” to give it its proper place in the person’s biography. Of course, “the end” will come no matter what the effort but medicine seems concerned that trying to prevent it means that something important is being lost or at least concealed: namely, the process of decay of the human being, both as a body and as a person. Labeling someone as “dying” ensures that this process of decline is visible. Free from the interference of life-sustaining measures, the dying patient slowly takes leave from life and becomes a ruin: she becomes, in Simmel’s words (1959), a site of life from which life has departed. Like an old building exposed to the destructive influences of nature, the dying patient becomes a spectacle of a struggle between the upward striving forces of life, will, and spirit and the downward dragging forces of death and nature—a struggle in which the latter seem to prevail. The ruin, Simmel writes, fascinates us because the spectacle of decay allows us to directly and materially experience the past. He says: “in the case of the ruin, the fact that life with its wealth and its changes once dwelled here constitutes an immediately perceived presence. The ruin creates the present form of a past life” (1959, 265). And he suggests that this material experience of the past conveys a certain sense of peacefulness. Could this be the reason why medicine insists so adamantly on letting the process of dying run its course unimpeded when it is clear that the patient has no hope of recovery? Allowing the dying patient to become a ruin in Simmel’s sense would enable friends and family to experience peacefulness in the face of the death of a loved one. A ruin, the dying patient palpably stands before friends and family as everything that the person once was, empowering them to mourn a loss not yet consummated.

Notes 1 This chapter is a reproduction of one of the chapters in my doctoral dissertation, titled “Public Health, Medicine and the Ideal of Self-Governance: Conflicts in the Modern

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3

4

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Culture of Health and Well-Being,” (Department of Sociology, Faculty of Graduate Studies, York University). This chapter also contains sections that are part of a paper I first published as “Hope and Resignation in Medical Care: When Doctors go to Court to Terminate Patient Treatment,” 2011, in Spectacular Death: Interdisciplinary Perspectives on Mortality and (Un)Representability, edited by Tristanne Connolly, Bristol: Intellect, pp. 201–16. The reader might notice that the medical profession is often referred to as an agent in this article. This should not be treated as an inappropriate anthropomorphization, as the article focuses exclusively on the profession as a whole instead of on individual caregivers, and on the ways in which the profession shapes the role of patients in the clinical setting. Consistent with this is the fact that the data that are analyzed consist mostly of documents produced by the different organizations that in one way or another claim to rule the practice of medicine in a given jurisdiction. The Tuskegee Syphilis Experiment is often cited in the bioethics literature as an example of the importance of consent in research and clinical practice. Scientists working on the project had inoculated unsuspecting black males with syphilis in order to study how the disease progressed in untreated patients. In the province of Ontario, legislators decided to codify court decisions favoring the requirement of informed consent and so gathered to pass the Consent to Treatment Act in 1991, the predecessor of the currently enforced Health Care Consent Act of 1996. In moving a second reading of Bill 109, An Act Respecting Consent to Treatment, on June 20, 1991, Ms. Lankin presented the bill to fellow Members of the Provincial Parliament as an effort to emphasize “the very important role to be played by consumers” in healthcare and as a tool to help knowledgeable consumers “make wiser choices regarding . . . treatment.” She said: “we are all consumers of health care. When it comes to health, consumers definitely need, all of us need to be fully informed. We want to know what our options are” (Legislative Assembly of Ontario, 1991). While these statements give a clear indication of the ideological climate of the day, the link between informed consent and consumerism through the idea of “choice” is weak at best, given that consumers can only exist in relation to a marketplace where providers compete with one another for customers. Informed consent, however, lacks this key element of competition in the marketplace, and should instead be regarded as the artifact of a notion of rights and enlightened citizenship. Both the College of Physicians and Surgeons of Ontario (2006) and the Canadian Medical Protective Association (also known as CMPA, 2006), a professional organization that provides legal advice and representation to physicians in Canada, have publications outlining the “do’s and don’ts” of informed consent that should help physicians keep safe from litigation. In its guide, the CMPA says: That consent to treatment was lacking or inadequate continues to be a frequent claim against physicians. Obviously, it is important therefore that physicians be aware of their legal obligations in obtaining consent from patients. It is hoped this booklet will assist in strengthening this awareness. It is not intended as a legal treatise on the subject of consent but rather as a practical guide for physicians in their day-to-day dealings with patients. (CMPA 2006, 2)

6 This line of reasoning has also been used by disability rights advocates to argue that the lack of informed consent in prenatal screening by virtue of the medical profession’s promotion of testing leads to a high rate of abortion of fetuses diagnosed with Down Syndrome and is therefore tantamount to “institutionalized eugenics” (see Dixon 2008). The argument here is not that informed consent is fundamentally a “lie,” but that it is so in its current form and that the correct use of informed consent can in fact promote real choice.

56 Diego Llovet 7 While Goldberger et al. (1997) suggest that the requirement of informed consent be changed to reflect better clinical practice with the physician as decision maker, both Gawande, and Tobias and Souhami claim that on average doctors have never in practice allowed patients to make decisions autonomously. In this respect, Tobias and Souhami say: “we believe that many doctors already vary what they say to patients in just the way we describe. We suggest that they should not be ashamed of so doing— whatever the ethicists say” (1993, 1201). 8 This sense is also conveyed by an article aptly titled “Informed Consent and other Fairy Stories” (Jones 1999). 9 Section 241 of the Criminal Code of Canada says: Every one who (a) counsels a person to commit suicide, or (b) aids or abets a person to commit suicide, whether suicide ensues or not, is guilty of an indictable offence and liable to imprisonment for a term not exceeding 14 years. 10 In re: Quinlan, a case decided by the New Jersey Supreme Court in March of 1976, was similar to that of Nancy Cruzan. Karen Quinlan, a young woman in a persistent vegetative state, had been on life support for some time until her parents, seeing that no recovery was possible, requested that she be disconnected from mechanical ventilation. Just like with Cruzan, both the hospital and the state refused and a legal battle ensued. The New Jersey Supreme Court authorized the cessation of life support. 11 In Ontario’s Health Care Consent Act of 1996, the definition of whether a patient is capable of making treatment decisions will depend on whether he or she is able to understand the information that is relevant to making a decision about the treatment, admission or personal assistance service, as the case may be, and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision. (Sched. A, s.4(1)l) 12 To date, a number of different types of advance directives have been made available to the public. In an appendix to an article, Perkins (2007) lists some of them: “A Living Will,” from 1978; “The Medical Directive,” from 1990; “Your Life, Your Choices,” from 1996 and 2001; “The Texas Advance Directive,” from 1999; and “Five Wishes,” from 2000. These forms, which range between 2 and 12 pages in length and sometimes offer “wallet cards” for people to carry with them, have been created, depending on the case, by physicians, patient rights organizations (such as “Concern for Dying” and “Aging with Dignity”), and government lawyers. The forms allow patients, through different formulations, to make choices about which treatments they would want and which ones they would refuse, should they become incompetent. The Medical Directive (Emanuel and Emanuel 1989), for example, formulates “four paradigmatic scenarios” defined by prognosis and type of disability and it offers a double entry chart where patients can check boxes indicating their choices for situations A (coma with no known hope of regaining awareness), B (coma with likelihood of surviving with permanent brain damage), C (brain damage in combination with terminal disease), and D (brain damage, no terminal illness). 13 The Act states that the Public Guardian and Trustee will act as substitute decision maker, should no person listed below be available. 14 The Board is a fairly large and active organization. It has 134 appointed members and an annual budget of almost 5 million dollars, and it receives and hears thousands of cases annually (over 5,000 applications in 2009–10 and 2,365 cases heard in 2009–10. According to its website (www.ontario.ca/laws/statute/96h02), over 80 percent of applications to the CCB involve a review of a person’s involuntary status in a psychiatric facility under the Mental Health Act, or a review

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under the Health Care Consent Act of a person’s capacity to consent to or refuse treatment. (Sched. A, s.4(1)l) 15 For the medical profession, the term “do not resuscitate” is inaccurate and should be taken to mean “do not attempt resuscitation.” The comment makes visible medicine’s concern about the limits of its own science and technique, as well as its desire to make these limits public by naming its procedures in ways that do not generate “false hope” among practitioners and clients. This recognition of the limited usefulness of the technique of cardio-pulmonary resuscitation comes after a relatively long period of optimism regarding the applicability of this technique. 16 It is interesting to note that there seem to be no Consent and Capacity Board cases where the roles of physicians and families are reversed, with the former demanding a continuation of treatment and the latter demanding that treatment be ceased. This fact serves to strengthen the claim that the five cases selected here adequately represent the modern medical ethos in relation to the question of the promise and limits of medical science. 17 Medicine’s formulation of the ICU as a setting that propitiates disorders and suffering associated with sleep deprivation is similar to the formulation of sleep deprivation as a technique of torture. The Guardian (Goldenberg 2004), for example, wrote about the US Army’s use of sleep deprivation against suspects of terrorism on an equal footing with mock executions. 18 Comparing patients to prisoners and hospitals to prisons is an interesting rhetorical move. Along with the construction of the doctor as torturer and the critique of medical technology, it adds drama to medicine’s self-presentation as a rehabilitated subject (“humane”/”no longer a torturer”) whose redemption authorizes it to take the moral high ground vis-à-vis patients and their relatives. This is a mechanism that is similarly available to criminals and other people with spoiled reputations who seek not just to be readmitted into the community that once expelled them, but to be admired by it. However, medicine’s position is one of privilege: because medicine is, by and large, in control of this narrative of self-critique and self-transformation, it faces none of the challenges that ex-convicts are likely to face when presenting their new self to sceptical members of the community—e.g. “once a thief, always a thief.” 19 Here, families lose their right to represent the patient and are ordered to do what the doctor prescribes. Should they refuse to do so, families risk losing their status as substitute decision makers, given that the Board may search for a new proxy who will agree to consent to the treatment. The battle between medicine and families, however, does not necessarily end with a decision by the province’s Consent and Capacity Board. Relatives can also challenge the Board’s decision by presenting their case before regular courts of justice, all the way up to the Superior Court. In this chapter I focus only on decisions made by the Board. 20 These conclusions point to two weaknesses in the conventional discourse on informed consent. One is that this discourse typically highlights the conflict between medicine and the patient, but it tends to forget the conflict between medicine and the family. As a discourse, informed consent is as much an affirmation of patient autonomy as it is a strategic recasting of the family as a secondary, marginal actor. The second weakness is that informed consent is conventionally presented as something that the profession does not want, something resisted. At least as far as these five Board cases go, this is far from the truth. While physicians may neither like nor foster patient participation, informed consent is deeply entrenched in medical discourse and practice and it serves as a template for lawful clinical decision-making. Medical aversion to patient participation should therefore not be confused with medical aversion to informed consent. 21 I have taken this phrase from a famous English case, quoted by the Consent and Capacity Board in one of its decisions. The quote reads:

58 Diego Llovet Looking at the matter as objectively as I can, and doing my best to look at the matter through Mr. Bland’s eyes and not my own, I cannot conceive what benefit his continued existence could be thought to give him. (2007b, 21) 22 Before becoming institutionalized in clinical practice, this notion of the moral duty to die circulated widely in works like those of Daniel Callahan, who wrote extensively on medical technology and the need to impose limits on its use, particularly in situations where such interventions are likely to delay death and cause unnecessary suffering. He wrote, among many others, The Tyranny of Survival and other Pathologies of Civilized Life (1973) and Setting Limits: Medical Goals in an Aging Society (1988). 23 The Consent and Capacity Board is but one mechanism to enforce the medicalization of “the good death.” Zimmermann (2007), for example, has suggested that clinical literature, too, can serve to create and enforce expectations among patients and their families regarding the “proper” way to die. 24 Armstrong and Caldwell also make this point in a paper where they show the role that the concept of “quality of life” has had in helping the medical profession find a standard for the evaluation of medical interventions. They say: “Quality of life at once defined the limits of technological excess and provided the counterpoint to medical success. Quality of life asserted the very meaning of life against the non-human forces that social change had unleashed” (2004, 369; my emphasis).

References Agamben, G. 1998. Homo Sacer: Sovereign Power and Bare Life. Translated by Daniel Heller-Roazen. Stanford, CA: Stanford University Press. ——. 2005. State of Exception. Chicago, IL: The University of Chicago Press. American Medical Association. 2010. “Decisions Near the End of Life.” Policy Finder, H-140.966. Accessed May 20, 2011. https://ssl3.amaassn.org/apps/ecomm/PolicyFinder Form.pl?site=www.amaassn.org&uri= percent2fresources percent2fdoc percent2fPolicy Finder percent2fpolicyfiles percent2fHnE percent2fH-140.966.HTM. Armstrong, D. and D. Caldwell. 2004. “Origins of the Concept of Quality of Life in Health Care: A Rhetorical Solution to a Political Problem.” Social Theory and Health 2: 361–71. Belkin, L. 1990. “States are a Patchwork of Life-and-Death Laws.” New York Times, June 26. Accessed 16 April 2016. www.nytimes.com/1990/06/26/us/states-are-a-patchworkof-life-and-death-laws.html. Braddock III, C., K. Edwards, N. Hasenberg,, T. Laidley, and W. Levinson, W. 1999. “Informed Decision Making in Outpatient Practice: Time to get back to Basics.” Journal of the American Medical Association 282(24): 2313–20. Bridson, J., C. Hammond, A. Leach, and M. Chester. 2003. “Making Consent Patient Centered.” British Medical Journal 327: 1159–61. Callahan, D. 1973. The Tyranny of Survival and other Pathologies of Civilized Life. New York: Macmillan. ——. 1988. Setting Limits: Medical Goals in an Aging Society. New York: Simon & Schuster. Campbell, Clark. “Yemensky, Information and Asset Sheet.” Accessed June 3, 2011. www.familylaw-ottawa.ca/File/Will%20and%20Power%20of%20Attorney%20 Information%20Sheet.pdf. Canadian Medical Association. 1995. “Joint Statement on Resuscitative Interventions.” Accessed May 20, 2011. http://policybase.cma.ca/policypdf/PD95–03.pdf.

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Canadian Medical Protective Association. 2006. “Consent: A Guide for Canadian Physicians.” 4th edition. Accessed February 16, 2011. www.cmpaacpm.ca/cmpapd04/ docs/resource_files/ml_guides/consent_guide/com_cg_introe.cfm. College of Physicians and Surgeons of Ontario. 2006. “CPSO Policy Statement: Consent to Medical Treatment.” Accessed February 16, 2011. www.cpso.on.ca/policies/policies/ default.aspx?ID= 1544. Consent and Capacity Board. N.D.”About Us.” Ccboard.on.ca. Accessed May 2, 2011. www.ccboard.on.ca/scripts/english/aboutus/index.asp. ——. 2003. “Case of Mrs. H.J. October 6th.” Canadian Legal Information Institute. Accessed February 22, 2008. www.canlii.org. ——. 2005a. “Information Sheet: Applying to Determine whether or not the Substitute Decision Maker has Complied with the Rules of Substitute Decision Making.” Accessed June 9, 2011. www.ccboard.on.ca/scripts/english/publications/formghtml.asp. ——. 2005b. “Form G: Application to the Board to Determine Compliance under Subsection 37 (1), 54 (1), or 69 (1) of the Act.” Accessed June 11, 2011. www.forms.ssb. gov.on.ca/mbs/ssb/forms/ssbforms.nsf/GetFileAttach/014-2981-04~3/$File/2981-04_.pdf. ——. 2005c. “Case of Ms. P., June 16th.” Canadian Legal Information Institute. Accessed February 22, 2008. www.canlii.org. ——. 2007a. “Case of Mr. G.A., July 6th.” Canadian Legal Information Institute. Accessed February 22, 2008. www.canlii.org. ——. 2007b. “Case of Mrs. K.M.S., June 27th.” Canadian Legal Information Institute. Accessed February 22, 2008. www.canlii.org. ——. 2007c. “Case of Mr. E.J.G., September 27th.” Canadian Legal Information Institute. Accessed February 22, 2008. www.canlii.org. ——. 2010a. “Annual Report: 2009–2010.” Accessed May 2, 2011. www.ccboard.on.ca/ english/publications/documents/annualreport20092010.pdf. ——. 2010b. “CCB Summary Templates: Application to Determine SDM Compliance.” Accessed June 9, 2011. www.ccboard.on.ca/scripts/english/publications/ccbtemplates.asp. Criminal Code. RSC. 1985. C-46. Cruzan by Cruzan v. Missouri Department of Health, 497 U.S. 261. 1990. Rehnquist, C. J., Opinion of the Court. CTV News. 2007. “Family Fights to Keep 84-Year-Old on Life Support.” December 17. Accessed September 23, 2009. www.ctv.ca/CTVNews/TopStories/20071217/Golub chuk_alive_071217/. ——. 2008. “Orthodox Jew to Remain on Life Support, Trial Next.” February 13. Accessed September 23, 2009. www.ctv.ca/CTVNews/Health/20080213/life_support_0802131. Dixon, D. 2008. “Informed Consent or Institutionalized Eugenics? How the Medical Profession Encourages Abortion of Fetuses with Down Syndrome.” Issues in Law & Medicine 24(1): 3–59. Emanuel, L. and E. Emanuel. 1989. “The Medical Directive: A New Comprehensive Advance Care Document.” Journal of the American Medical Association 261(22): 3288–93. End of Life Project. “Withholding and Withdrawal of Potentially Life-Sustaining Treatment.” The Health Law Institute, Dalhousie University. Accessed May 20, 2011. http://as01.ucis.dal.ca/dhli/cmp_ww/default.cfm. Fagerlin, A. and C. Schneider. 2004. “Enough: The Failure of the Living Will.” The Hastings Center Report 34(2): 30–42. Gawande, A. 1999. “Whose Body Is It, Anyway? What Doctors Should Do when Patients Make Bad Decisions.” The New Yorker, October 4. Accessed May 20, 2011. www.new yorker.com/magazine/1999/10/04/whose-body-is-it-anyway.

60 Diego Llovet Goldberger, J., J. Kruse, M. Parker, and A. Kadish. 1997. “Effect of Informed Consent on Anxiety in Patients Undergoing Diagnostic Electrophysiology Studies.” American Heart Journal 134(1): 119–26. Goldenberg, S. 2004. “US Forces Were Taught Torture Techniques.” Guardian. Accessed July 17, 2008. www.guardian.co.uk/world/2004/may/14/iraq.usal/print. Health Care Consent Act, S.O. 1996, c. 2, Sched. A. In re: Quinlan, 70 N.J. 10, 355 A.2d 647. 1976. Jones, M. 1999. “Informed Consent and Other Fairy Stories.” Medical Law Review 1(2): 103–34. Katz, J. 1984. The Silent World of Doctor and Patient. New York: The Free Press. ——. 1994. “Informed Consent—Must it remain a Fairy Tale?” Journal of Contemporary Health Law and Policy 10: 69–91. Krag, A., H. Nielsen, M. Norup, S. Madsen, and P. Rossel, P. 2004. “Research Report: Do General Practitioners Tell their Patients about Side Effects to Common Treatments?” Social Science and Medicine 59: 1677–83. Lambert, S. 2008. “Man at the Centre of End-of-life Debate Dies.” The Toronto Star, June 26. Accessed September 23, 2009. www.thestar.com/news/canada/article/449495--manat-centre-of-end-oflife-debate-dies. Marshall, G. 1998. Dictionary of Sociology. Oxford: Oxford University Press. New York Times. 1990. “A Multiple-Choice Living Will.” Accessed December 28. www.nytimes.com/1990/12/28/opinion/a-multiple-choice-living-will.html. Ontario, Legislative Assembly. 1991. Debates and Proceedings. Accessed June 20. www.ontla.on.ca/web/house-proceedings/house_detail.do?Date=1991-06-20 Ontario Medical Association. 2010. “OMA Policy Paper: Patient-Centred Care.” Ontario Medical Review, June. www.oma.org/resources/documents/patient-centredcare,2010.pdf. Parsons, T. 1964. “Social Structure and Dynamic Process: The Case of Modern Medical Practice.” In The Social System, 428–79. New York: The Free Press. Perkins, H. 2007. “Controlling Death: The False Promise of Advance Directives.” Annals of Internal Medicine 147(1): 51–7. Pranati, B. 2010. “Informed Consent: Are We Doing Enough?” Perspectives in Clinical Research 1(4): 124–7. Press, N. and C. Browner. 1997. “Why Women Say Yes to Prenatal Diagnosis.” Social Science and Medicine 45(7): 979–89. Reibl v. Hughes, 2 S.C.R. 880, 1980 SCC. Rodriguez v. British Columbia Attorney General, 3 S.C.R. 519, 1993 SCC. Sahin, N., A. Ozturk, Y. Ozkan, and A. Erdemir. 2010. “What Do Patients Recall from Informed Consent Given before Orthopedic Surgery?” Acta Orthopaedica et Traumatologic a Turcica 44(6): 469–75. Salmond, S. and E. David. 2005. “Attitudes towards Advance Directives and Advance Directives Completion Rates.” Orthopaedic Nursing 24(2): 117–27. Schneiderman, L., N. Jecker, and A. Jonsen. 1990. “Medical Futility: Its Meaning and Ethical Implications.” Annals of Internal Medicine 112(12): 949–54. ——. 1996. “Medical Futility: Response to Critiques.” Annals of Internal Medicine 125(8): 669–74. Silveira, M., S. Kim, and K. Langa. 2010. “Advance Directives and Outcomes of Surrogate Decision Making before Death.” New England Journal of Medicine 362(13): 1211–18. Simmel, G. 1959. “The Ruin.” In Georg Simmel, 1858–1918, edited by Kurt Wolff, 259–67. Columbus, OH: The Ohio State University Press.

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Singer, P. 2007. “Turning Health Workers into Torturers.” The National Post. December 18. Smith, G. 1995. “Utility and the Principle of Medical Futility: Safeguarding Autonomy and the Prohibition against Cruel and Unusual Punishment.” Journal of Contemporary Health Law and Policy 12(1): 1–39. St. Louis Post Dispatch. 1988. “High Court Favors Prolonging Life.” November 17. Tobias, J. and R. Souhami. 1993. “Fully Informed Consent Can be Needlessly Cruel.” British Journal of Medicine 307: 1199–201. Weber, M. 1997. The Theory of Social and Economic Organization. Translated by Talcott Parsons. New York: The Free Press. World Health Organization. 2007. People at the Centre of Health Care: Harmonizing Mind and Body, People and Systems. Accessed April 21, 2011. www.wpro.who.int/publica tions/docs/PEOPLEATTHECENTREOFHEALTHCARE_final_lowres.pdf. Zimmermann, C. 2007. “Death Denial: Obstacle or Instrument for Palliative Care? An Analysis of Clinical literature.” Sociology of Health and Illness 29 (2): 297–314.

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Judgment, care, and informed consent Philip Walsh

Introduction “Rationalization” and “individualization” have become well-worn conceptual terms within sociology to describe dominant trends within the culture of “late modern” societies that affect the potential for personal agency. According to conventional sociological wisdom, agency is problematized through rationalization and enhanced through individualization. This has implications for more philosophical/ethical questions such as the value of individual autonomy and the meanings of dignity and rights. In this chapter, I explore the extent to which the end-of-life care relations between medical practitioners and patients exemplify how problems of rationalization and individualization are dialectically intertwined. I first examine the meaning of these terms through some of the theoretical literature, before turning to the role of the principle of informed consent in end-of-life care as a case study of this entwinement. I then examine the problems of judgment that these developments imply, with particular reference to Hannah Arendt’s conception of reflective judgment.

Rationalization and individualization in late modernity The core of Max Weber’s work is often considered to be his understanding of the modern world in terms of rationalization (cf. Baehr 2016, 17). Rationalization has two sources for Weber. The first is science, which, as he notes in the first of his two World War I addresses to students, “Science as a Vocation,” (1946, 139) “disenchants” the world. This points to the importance not of technology per se, nor of expertise in its handling (in fact, he notes that this has diminished for most people), but to the fact that “one need no longer have recourse to magical means in order to master or implore the spirits . . . Technical means and calculations perform the service” (140). But disenchantment, and the scientific enterprise that advances it, goes hand in hand with a second element: the growth of formal rules and the application of pre-existing formulae to human conduct. As more and more areas of human life become subject to the formalization of rules, Weber suggests, the space for human agency diminishes: hence his image of the modern world as an “iron cage” of rationality.

64 Philip Walsh Weber’s rationalization thesis has been subjected to various embellishments and re-workings, not least by his widow Marianne Weber, who was responsible for editing many of his writings that were later published as Economy and Society (1978). In this work, rationalization is linked to Weber’s theory of action by being associated with a particular variant of rational action that he dubbed “formal” (Wertrationalität). Formal rational action is concerned entirely with efficient means and acquires its meaning in this work through the contrast with substantive rationality (Zweckrationalität). Substantive rationality involves a questioning of, and reflection on, ends as well as means, which inevitably requires reference to values in the estimation of the ends. However, Weber suggests that the dominance of formal rational action, as an outcome of both the disenchantment of the world and the proliferation of rule-patterned activity, tends to eclipse substantive rationality. As Robert Merton (1957, 201) later expressed the point, “adherence to the rules, originally conceived as a means, becomes transformed into an endin-itself.” Subsequent sociological theories have sought to address the dysfunctional aspects of rationalization by proposing limits to it. Daniel Bell (1973, 67) distilled out his own distinctive conception of rationalization by defining it as “the spread through law, economy, accounting, technology, and the entire conduct of life of a spirit of functional efficiency and measurement, of an ‘economizing’ attitude (maximization, optimization, least cost) toward not only material resources but all life.” Bell agreed with Weber that this “economizing attitude”—or technocratic worldview—would likely proceed at the cost of reasoned consideration of the ends to which such economizing means aims. Nevertheless, he argued, “in the end, the technocratic mind-view necessarily fails before politics” (Bell 1973, 365), by which he meant that a democratic polity was a necessary and viable counterweight to technocracy. The “difficulties” of democratic politics, its intrinsically agonistic, conflicted, power-oriented and “irrational” character, for Bell, was part and parcel of its role as a redoubt against rationalization. In contrast, Jürgen Habermas has sought to develop a “rational politics” to contain the totalizing spread of “instrumental rationality.” This is premised on Habermas’s theory of communicative action, which re-interprets Weber’s theory of action in order to distinguish more sharply between rationalization and reason. By defining communicative rationality as a distinct type of action that is directed not towards “foreseen ends,” but towards the achievement of mutual understanding (1981, 285–6), Habermas aims at defining the environments within which particular kinds of rationality are legitimate. The proliferation of formal/instrumental rationality in the sphere of human communicative relations rests not on extrasubjective factors, but on a distortion of the lifeworlds within which people make sense of the actions of themselves and others. In his earlier writings, Habermas argued that rationalization, in the sphere of the productive economy, and “reason” in the sphere of human relationships can co-exist and become mutually reinforcing once their respective meanings become fully sutured into everyday life. However, in his more recent work (e.g. Habermas 2003), in which he focuses on the “disenchanting” consequences of contemporary technology—particularly in the

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life-sciences—Habermas is arguably more pessimistic about the possibility of limiting rationalization. Another important strand of sociological theoretical literature highlights a prima facie diametrically opposed tendency, in the phenomenon of “individualization.” Arguably this theme originates in Durkheim, whose conception of organic solidarity is premised on the enhancement of individuality in the modern world. Ulrich Beck (2009, 54–5; Beck and Gensheim Beck 2001, 22–9) is perhaps the most prominent contemporary exponent of the theory of individualization. For Beck, the growth of individualism, together with the ideal of a “life of one’s own” (Beck and Gensheim-Beck 2001), equates with the fact that the power to take lifealtering decisions increasingly accrues to the individual, rather than being primarily determined by cultural or institutional factors. For Beck, and Anthony Giddens, this reflects a shift in the time and space horizons available to people living in a globalized late modernity. Earlier societies persisted largely through the patterning of inherited or “traditional” practices, which oriented individual and collective lifeworlds—to a greater or lesser degree—towards the past, and persistence, or “fate,” was the organizing principle of the culture. As “risk” or “post-traditional” societies increasingly promote a culture of planning, forecasting, projection and “colonization of the future” (Giddens 1994, 125), the orientation of lifeworlds shifts from “fate” to “risk,” and this further promotes a strongly individualistic culture, in which identities, roles, skill-sets, ethical stances, and decision procedures are increasingly devolved onto the individual. While the overall field of rule-patterned activity (rationalization) expands, then, individuals become disembedded from the sources that provided them with repertoires for making sense of the meaning of social environments. This also has the effect of enhancing reflexivity, as Margaret Archer has pointed out. Although she criticizes the theoretical frameworks of Beck and Giddens, she agrees that the intensification of reflexivity is a consequence of increased individualization. For Archer (2012), this “reflexive imperative” derives from individuals confronting conditions that force them to become self-aware, allowing both individual empowerment and new opportunities for deliberation and action. Although Beck and Archer have both noted that individualization can have a “dark side” in the potential for atomization and anomie, they largely view it as an emancipatory turn, insofar as it advances personal autonomy. Although proponents of the individualization thesis see it as in conflict with those who emphasize progressive rationalization, there is a sense in which the two processes are by no means incompatible, and even mutually reinforcing. The dilemmas of end-of-life care provide an interesting example of this, and expose the limitations of both reflexivity and communication to deal with problems that stem from both individualization and rationalization. As I argue below, this illustrates the need to reconsider human judgment as a response to some of the dilemmas engendered by rationalization and individualization.

End-of-life care and informed consent In his (1984) essay, The Loneliness of the Dying, Norbert Elias discusses the changes in attitudes toward the dying that have accompanied other major

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long-term alterations in the human condition. The most significant of these is the privatization and individualization of dying. Like sleeping, sexual activity, excreting, and other bodily functions that human beings share with animals, there has been a long-run tendency for these activities to be pushed more and more behind the scenes of everyday life. In the past of industrialized nations, and in many places in the less developed world today, these are—or were—things that were done much more often in the company of others. The communality of social life was such that it was impossible to withdraw oneself from others in the course of these activities. Dying in the past was, therefore, a far more public and mundane event. Healthy people, perhaps not routinely, but very often, encountered dying people in the course of their everyday lives. Moreover, there was far less embarrassment or hesitation in speaking about such things. Death could be spoken of with less solemnity and was less bound by taboo. There was no strong sanction, for example, in exposing children to the experience of dying people, or of discussing death with them. The modern hospital, the professionalization of doctors, and the explicit formalization of the doctor–patient relationship have had the effect (among many others) of making death and dying more private. Elias points out that this has also engendered a certain social distance that can lead to more loneliness among the dying today. As sick and dying people vanish from everyday experience, they tend to experience themselves—in the context of the hospital and long-term care homes—as inhabiting a different world from the healthy. This potentially attenuates their ties with the living and increases their loneliness. They experience their vulnerability more acutely. The power differential between the healthy and the sick, and therefore between the caregiver and receiver, is also potentially greater under the conditions of the privatization of dying. Since Elias wrote his essay on dying in 1984, the culture of the modern hospital and the relation between the dying and caregivers has altered further. The sequestration of the dying behind the scenes of everyday life persists, though arguably taboos against the open discussion and experience of death have weakened. But perhaps the decisive shift is dying has become more and more an individual act that is more and more subject to rule-patterning. Decisions about whether to submit to life-prolonging procedures, together with deliberation and reflection upon the ongoing value of living are increasingly borne by the individual. But such decision-making and deliberations have also become increasingly subject to rules and rule-following, and therefore potentially fenced in by formally rational norms. A key driver of both these developments has been the institutionalization of the principle of informed consent. Informed consent originally evolved as an ethical principal to govern relations between patients and caregivers, and indeed has succeeded in solving many of the problems of personal authoritarianism and asymmetries of power that previously existed between these roles. It was, for example, standard practice in the nineteenth and early twentieth century for doctors to make decisions about the appropriateness of intervention, including surgery, without seeking permission or even enlightening patients about the nature of the procedure. Llovet (2012),

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Katz (1984), and others have traced the history of informed consent with reference to the major legal cases through which it came to be established. The landmark cases of Pratt v. Davis (1905) and Schloendorff v. Society of New York Hospital (1914), in both of which surgical procedures were carried out on women without their prior consent or knowledge, established the principle of consent to medical procedures in US law. In 1957, a California law court ruled in favor of a patient who had been paralyzed as a result of an intervention the risks of which he had not been made aware of, thereby securing the principle of informed consent. Informed consent requires that patients be in a position to fully understand the costs and benefits of a procedure, such that they can make reasoned choices about the contribution it may make to their health. Informed consent produces, therefore, not only a set of external, legally sanctioned norms governing practices, but also a novel form of intersubjectivity. Not only must medical practitioners “take the role of the patient” in proposing and enacting interventions, but patients are required to take up a position of expertise relative to their own lives and health. The guiding principle of informed consent is that the patient is in the best position to judge the costs and benefits of a particular procedure. This principle has come to be not only an accepted part of the regulations governing medical practice in every country in the western world, but also a feature of the lifeworlds of medical practitioners and patients. In relation to end-of-life care, informed consent has also come to be the main principle governing the care relationship. But, in contrast to situations where informed consent is sought in order to save the life, or restore the health, of the patient, end-of-life care raises the possibility that neither of these ends can or should be aimed at. Informed consent in these situations can lead to complex dilemmas in which the meanings of “costs and benefits” are thrown into doubt because life or health can no longer function as baselines for determining their meaning. Llovet (2012) has noted the paradoxes that the language of informed consent produces under these conditions. Informed consent enables a transition in the norms governing medical treatment from an emphasis on saving life and restoring health—a battle against dying—to the management of death as another aspect of illness, over which patients must establish themselves as “experts,” capable of making reasoned choices relative to an assumed, agreed-upon standard of costs and benefits, which does not in fact exist. This represents a dilemma of individualization: formally enhanced reflexivity and individual agency become questionable goods under these circumstances. Indeed, some medical practitioners have critiqued the principle of informed consent along these lines, suggesting that the burden of decision-making—especially in the absence of meaningful standards of well-being—adds to the burden of disease and impugns the professional responsibility of doctors to prevent suffering (Tobias and Souhami 1993; Gawande 1999). The individualization of action under conditions where no positive costbenefit outcome can be calculated leads to situations where it becomes possible for caregivers to discuss a patient’s “obligation to die.” This is captured well in a remark made by a British doctor, quoted in Llovet (2012) on a particular case, who observes:

68 Philip Walsh Looking at the matter as objectively as I can, and doing my best to look at the matter through Mr. B’s eyes and not my own, I cannot conceive what benefit his continued existence could be thought to give him. (162, n.62) The principle of informed consent becomes potentially problematic in the case of end-of-life care because it was designed as an instrument to govern means to ends that were taken for granted. In this sense, informed consent, when it is applied to end-of-life care, represents an archetypical case of formal rationality, in which the ends aimed at are not sufficiently objectified to the actors involved. When neither health nor life can be secured, it is not clear what informed consent is intended to accomplish. Moreover, the individualization that results from inserting the principle of informed consent into the caregiving relationship potentially leads to the translation of “existential” questions into the clinical vocabulary of cost-benefit analysis. This leads to formulations such as the above, “what benefit [the patient’s] continued existence could be thought to give him,” which are not heartless but close to meaningless. One possible response to this problem is Habermasian: informed consent has to be understood not as a vehicle of formal, but of communicative rationality. The intersubjective understanding between caregivers and patients that informed consent enables is not exclusively in the service of health or life; it is an ethical principle intrinsic to the relationship itself, and is an extension of the basic recognition and dignity that human beings owe to each other in their relationships more generally. Informed consent may allow the patient to aspire to an expertise in making judgments that enhance her health and life (autonomy), but this is not the primary value of informed consent. Rather, such expertise must be seen as flowing from the intrinsic dignity and rights of the individual. In the case of endof-life care, this ethical rationale for the principle of informed consent comes to the fore, as the possibilities for “expertise” shrink. But the ethical rationale is ultimately the basis for the principle in all cases, not simply those involving endof-life care. The problem with this response is that it does not cohere very well with either the legal justifications that have been advanced to support the principle of informed consent, or with how actors understand the principle in practice. It is true that, in cases where patients have lost the capacity to make decisions about their ongoing life or health, for example, advanced dementia, or where a patient enters a persistent vegetative state, the values shift from those associated with “autonomy” to those around “dignity.” But the ethics of communicative rationality do not fit very easily with notions of dignity. For Habermas, communicative rationality leads to an ethics of recognition, which in turn implies equality. Notions of dignity derive from rights-based discourses that tend to be grounded in deontological ethics. We can conclude, then, that informed consent is to be credited as the primary reason for the redress in the balance of power between caregivers and patients. This is because it is a technology that provides means for patients to enhance their expertise and therefore their autonomy within the caregiver–patient relationship.

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In the case of end-of-life care, however, informed consent has had ambivalent effects, because it cannot address the substantive and existential questions that tend to arise. One further conclusion to draw from the rationalization and individualization of end-of-life care is that caregivers and patients need different criteria to judge situations where the logic of formal rationality and of expertise does not hold. Indeed, where technical rules gain an upper hand as the decisive feature governing interaction, individual judgment is likely to play a far smaller role in the construction of the relationship. It also potentially increases the social distance between caregivers and patients, and exacerbates, perhaps, the loneliness of the dying. But what is it to exercise judgment? This was a question that interested Hannah Arendt intensely, especially in her later writings. Her late masterpiece, The Life of the Mind (1971) was organized around investigating three human mental faculties: thinking, willing, and judging. Of these, she was perhaps most interested in judging, though she did not live to write the third volume exploring it. Her reflections on judging are therefore incomplete. Nevertheless her drafts and lectures have allowed scholars to piece together some of her thinking about judging. An exploration of this sheds some light on how judgment might play an enhanced role in people’s confrontation with their own mortality and end-of-life care.

Hannah Arendt and the capacity to judge At first glance, judgment seems to be a relatively self-evident human faculty. But this is deceptive, and we need to distinguish it from its cognate capacities. Most mental acts that we call judgments are in fact pre-judgments, or prejudices. A prejudice is an already-existing opinion to which we may assent, but which does not involve our active mental capacities. Prejudices are necessary accoutrements to the tasks of understanding the world and running one’s everyday life without having to constantly question established habits of identification (Arendt 2005, 102). But the danger of prejudices (or one of them) is that they are useless in dealing with novel phenomena. When one encounters something new, one must stop relying on pre-judgments and engage judgment itself. Judgment requires that we represent a situation to ourselves in an ordered manner that allows us to draw a conclusion. Judgment is also not the same thing as thinking or willing. These are distinct human capacities that do not necessarily work together. Finally, we should distinguish judgment from reflexivity. Reflexivity is an attribute of a mental capacity that allows it to be directed to itself, but is not itself a capacity. Arendt remarks that judgment is the least reflexive of the three mental capacities of thinking, willing, and judging (1971, 73). Arendt explored the topic of judgment through a creative re-working of Kant’s theory of judgment, and contrasts two kinds of judging: when we discern the appropriate rule under which to subsume an act or situation we are exercising determinative judgment. Deduction, or subsuming particulars under universals, are archetypically determinative judgments. We make determinative judgments

70 Philip Walsh in order to reflectively classify, to organize, and to establish what is true in an everyday sense. We also make use of determinative judgment in our moral and interpersonal relations, since these are largely encoded within the prevailing culture. The concept of “following a rule,” as Weber understood, involves determinate judgments insofar as it involves the normally tacit subsumption of a particular (this act) under a general rule (acts of this kind). Tacit rule-following is a kind of formal rationality, in which the end at which the activity aims does not enter the agent’s consciousness as a determining feature of her motivation. Arendt’s conception of determinative judgment is therefore, to some extent, a subjective correlate of formally rational action. But there are also reflective judgments. Reflective judgment involves the capacity to recognize parallels of the type: to what extent does a situation or thing resemble another? Reflective judgment operates via examples, and requires imagination, since only through imagination can we juxtapose a situation or event that is present to us with another that is not. Reflective judgment is in play not primarily when we try to determine what is true, but when we try to discern what is right or wrong, as well as what is beautiful or ugly. Reflective judgment does not tell us what is the appropriate rule for understanding a given situation, but directs our attention to the particularity of the situation. It is therefore an inherently reflexive capacity. It is also our only recourse when we encounter “unrationalized” areas of human conduct, where no rule is available to subsume our action under. There is another important element to reflective judgment for Arendt. This concerns its necessary reference to communicability and to a shared world. When we exercise reflective judgment we necessarily entertain the possible judgments and opinions of others. This does not mean following the opinions of others, but of including their possible opinions when we reflect on a situation. Reflective judgment, then, must always appeal to communicability, and therefore to a public human world. What we feel is wrong or right, or what we find tasteful are private experiences, but the reflective judgment that allows us to say this is beautiful, or this is wrong require an enlarged mentality that takes into account a common human world. Arendt was of the opinion that the capacity to make reflective judgments was becoming impoverished in the modern world as a direct result of the dominance of apparatuses of determinative judgment, and her position was not dissimilar from Weber’s in this respect. These apparatuses themselves proliferate in response to the complexity of the modern world and the transformation of the meaning of private and public. In situations where there is no shared background of meanings where communicability can find a foothold, even in situations that enhance reflexivity, it becomes difficult for agents to exercise reflective judgment, or even to make judgments about judgments, that is, recognize the importance of distinguishing between determinate and reflective judgment. Arendt examined various cases where people lost the capacity to judge reflectively. The most significant example of this was, of course, mid-twentiethcentury totalitarian societies. These societies aim not simply at the control of individual actions but of individuals’ understandings, particularly of the moral

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implications of their acts, which are closely tied, in Arendt’s view, to reflective judgment. One of the most frightening facts about such societies is that this did not prove to be so very difficult. It also did not lead to a breakdown of everyday ordinary morality, since this is governed largely by rule-following. But totalitarianism created conditions where large numbers of people were unable to “see that crimes remained crimes even if legalized by the government” (2003, 78). But Arendt (1961, 179) also suggested that a conflict between determinative and reflective judgment could emerge in less extreme situations. What she perceived to be the “crisis in education” was one of these. She was thinking of the tendency within education to emphasize pedagogy as the core “skill” of educators instead of expertise in a specific field. Pedagogy teaches general rules as guides to action, thereby reducing the role of particular considerations in reflective judgment. Reflective judgment then involves two elements: the capacity to understand a situation in its particularity—and not simply as a case to which a rule can be successfully applied—and the capacity to enter into how diverse others comprehend it. Reflective judgment is therefore a capacity to which we have recourse when there is no existing rule to apply. It is a complement to what Arendt referred to as “thinking without bannisters,” by which she meant responding sensitively and responsibly to events of which we have no experience or prior knowledge but which we must somehow comprehend and come to terms with.

Conclusion: judgment and end-of-life care Judgment, as a distinct human capacity, is not the preserve of a particular legal occupation. It is—like labor, work, and action—“within the range of every human being” (Arendt 1998, 5), and we are called upon to make reflective judgments at various points in our lives, not least at the end. But the rationalization and individualization of the care relationship in accordance with the principle of informed consent cedes little space or opportunity for reflective judgment. Since every decision must be made, under the doctrine of informed consent, according to rules that prioritize patient autonomy, there can be no cases where no rule is applicable, and in which reflective judgment could come into its own. Informed consent surely has a role to play in securing the autonomy of the dying patient, but we should not assume that individual autonomy is always the practical or ethical end that should be aimed at. In such cases, informed consent ceases to apply as a guiding principle of action. But this does not mean that there can be no principles to apply. It means only that we have to look to a different human faculty, that of reflective judgment, which is not in the service of rules or precedents, to guide action.

References Archer, M. 2012. The Reflexive Imperative. Cambridge: Cambridge University Press. Arendt, H. 1961. Between Past and Future: Eight Exercises in Political Thought. New York: Penguin.

72 Philip Walsh ——. 1971. The Life of the Mind (One-Volume Edition). New York: Harvest/HBJ. ——. 1998. The Human Condition. Chicago, IL: The University of Chicago Press. ——. 2003. Responsibility and Judgment. New York: Schocken. ——. 2006. The Promise of Politics. New York: Schocken. Baehr, P. 2003. Founders, Classics, Canons: Modern Disputes over the Origins and Appraisal of Sociology’s Heritage. London: Transaction. ——. 2016. Founders, Classics, Canons: Modern Disputes over the Origins and Appraisal of Sociology’s Heritage, 2nd Edition. London, New Brunswick, NJ: Transaction Beck, U. 2009. World at Risk. Cambridge: Polity. Beck, U. and E. Gensheim-Beck. 2001. Individualisation. New Delhi: Sage. Bell, D. 1973. The Coming of Post-Industrial Society. New York: Basic Books. Elias, N. 1984. The Loneliness of the Dying. London: Blackwell. Gawande, A. 1999. “Whose Body Is It, Anyway? What Doctors Should Do when Patients Make Bad Decisions.” The New Yorker, October 4, p. 84. Giddens, A. 1994. “Living in a Post-Traditional Society.” In Reflexive Modernization: Politics, Tradition and Aesthetics in the Modern Social Order, edited by U. Beck, A. Giddens, and S. Lash. Stanford, CA: Stanford University Press, 56–109. Habermas, J. 1981. The Theory of Communicative Action, Volume 1: Reason and the Rationalization of Society. Cambridge: Polity Press. ——. 2003. The Future of Human Nature. Cambridge: Polity Press. Katz, J. 1984. The Silent World of Doctor and Patient. New York: The Free Press. Llovet, D. 2012. “Public Health, Medicine and the Ideals of Self-Governance: Conflicts in the Modern Culture of Health and Well-Being.” PhD diss., York University. Merton, Robert K. 1957. Social Theory and Social Structure. Glencoe, IL: The Free Press. Tobias, J. and R. Souhami. 1993. “Fully Informed Consent Can Be Needlessly Cruel.” British Journal of Medicine 307: 1199–201. Weber, M. 1946. “Science as a Vocation.” In From Max Weber: Essays in Sociology, edited by H. Gerth and C. Mills. New York: Oxford University Press. ——. 1978. Economy and Society: An Outline of Interpretive Sociology. Berkeley, CA: University of California Press.

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End-of-life conflicts, the law, and Arendt’s political thinking Kieran Bonner

We accept that the patient told her children never to give up. Encouraging perseverance and determination is something that most parents do. There was never any discussion between the patient and her children as to what the general admonition to not give up might mean in the context of the circumstances that she was now in. Did Ms. P. believe that not to give up extended to performing CPR on an unconscious person whose organs were shutting down? (Consent and Capacity Board 2005, 10; quoted in Llovet 2012, 148) Intersubjective meanings are ways of experiencing action in society. They are expressed in the language and descriptions, which constitute or ground the institutions and practices in society. . . . Intersubjective meanings give people a common language to talk about social reality and a common understanding of certain norms, but only with common meanings does the common reference world contain significant common actions, celebrations, and feelings. These are objects in the world that everyone shares. This is what makes community. (Charles Taylor, “Interpretation and the Sciences of Man” 1977, 121–2)

Intersubjectivity and community Taylor, in his celebrated essay, addresses the limits of a social science that seeks to sidestep the intractable problem inherent in interpretation, the problem of the hermeneutic circle. Taylor does not doubt the productivity of such a science, and he does not doubt the claims of social science to be a self-regulating institution with regard to policing what counts and what does not count as verifiable knowledge. Neither does Taylor address the issue of the reflexive integrity of such social science research, whether in the ethnomethodological demonstration that such knowledge hides the way its accomplishment is ground in the member’s methods (Garfinkel 1967), or in the analysis demonstration that it is committed to concealing its own community of commitment (McHugh et al. 1974). Rather,

74 Kieran Bonner he addresses the concern of the deeper issues that are necessarily excluded from research by virtue of its commitment to verifiable empirical knowledge. These deeper matters are intersubjective meanings, “which constitute or ground the institutions and practices in society” (Taylor 1977, 121). Such intersubjective meanings “fall through the net of mainstream social science. They can find no place in its categories. For they are not simply a set of subjective reactions, but part of the common world” (Taylor 1977, 122). As an illustration of this argument, Taylor talks about the intersubjective meanings that ground the practice of voting in a liberal democratic state. The activity of marking and counting papers has to bear intentional descriptions which fall with a certain range before we can agree to call it voting . . . Implicit in these practices is a certain vision of the agent and his relation to others and to society . . . It requires a picture of the parties as in some sense autonomous, and as entering into willed relations. And this picture carries with it certain implicit norms, such as that of good faith, or the norm of rationality . . . or the norm of continued freedom of action as far as attainable. (Taylor 1977, 118–19) While social science can correlate voting patterns with class, race, gender, etc. and these correlations can be scientifically verified, the picture of the agents, their relation to others and to society is implicit to the practice of voting and grounds the social science research on voting. This implicit vision, as Taylor notes, is variable according to the particular society and to groups within society, and it is analytically arguable. Not all agents in every society see themselves as rationally autonomous and entering into willed relations; more importantly, it is arguable whether this vision of agents in their relation to others and society is the best for community. Deeply, of course, this particular vision is misleading, as it relies on a “we” or community that makes it appear as if the autonomous individual or “I” is first. “What the ontology of mainstream social science lacks is a notion of a meaning as not simply for an individual subject; of a subject who can be a ‘we’ as well as an ‘I’” (Taylor 1977, 123), or as he was to put it in his later work (1989), a notion of a subject who has a self-reflective relation to the moral framework that necessarily grounds her speaking and action. It is precisely to such a lack that the art of hermeneutics seeks to respond (Gadamer 1975).

Illness, end of life, and informed consent Illness and end-of-life concerns is one everyday area where the vision of the agent in relation to others and to society is topicalized and made a subject of dialogue. As is well known, the rise of the modern era includes not only the rise of the liberal democratic state, including the disciplinary society that is a feature of that state (Foucault 1977), but also the rise of the institutionalization of medicine. Both law and medicine, as modern institutions in the Parsonian sense of that term, limit,

End-of-life conflicts 75 shape, and modify the contemporary doctor–patient relationship. For example, as shown by Llovet (2012), the law on informed consent was initially developed to protect the patients in the face of the rise of the institutionalization of medicine, scientific medicine, medical technology and the way these threaten to orient to the patient as a mere carrier of symptoms and illness. The law, through the requirement for informed consent, requires that the medical profession, as agents of modern health institutions, make room for patient participation. The vision of the agent here builds on the idea of the autonomous individual, as described above, an individual who has the power to consent or to deny medical intervention and is entitled to be fully informed about the need for and consequences of such medical intervention. Though the medical professional is the expert both in terms of the nature of the illness and the kind of intervention that best redresses that illness, the law requires that this professional fully inform the patient regarding her knowledge and elicit the consent of the patient for any intervention. In this sense, the patient is not just a medical entity but also a legal entity, not only someone suffering an illness but also a bearer of rights. While being informed and giving consent can often take the form of mechanically signing a piece of paper (after being informed of the nature and consequences of the intervention), this simple act, like putting a mark on a piece of paper (voting) presumes and rests on a vision of a subject in relation to others and society. As informed consent becomes a practice that is routinized, we recognize how medical professionals and institutions often use it for the purposes of selfprotection, manipulation of the patient’s choice, and/or managing the patient in ways that suit the doctors and their institutions. From the perspective of this research, medical professionals often reveal themselves to be self-motivated and self-interested agents, acting to protect themselves individually and institutionally, in the context of legal requirements (Llovet 2012, 122–8). Such actions reveal again the inevitable rationalization of the lifeworld that Weber (1946; 1964) and Habermas (1984) highlight. Where for Habermas, the system’s needs for power leads to the rationalization of lifeworld elements (in this case the relation between doctors and patients), for Weber this rationalization is a fate of modern times that must be borne, the fate that good initiatives (to give a place for patients’ participation in their own healthcare) have unintended consequences, in this case fated to become routinized and institutionalized in ways that undermine the intention of the change. The stories of patients who suffer at the hands of the very health institutions dedicated to their care are myriad, giving rise, for example, to the establishment of the Patients Association of Canada.

Human dignity in relation to life and death However, this is not the only story to be told about the institutionalization of informed consent. As Llovet (2012, 221) states, the discourse of informed consent and its emphasis on the question of human dignity becomes, in the context of the health care organization, a resource

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Kieran Bonner for medical professionals to speak with patients and their relatives about the limits of medical care and the need to prepare for the end, often in the way of making a decision to not pursue further treatments.

That is, the legal requirement of informed consent in the context of the healthcare organization is not only rationalized to protect medicine as an institution but it is also a resource for the medical profession to address the limits of medicine in relation to its ability to keep an inert body alive. Thus human dignity, as against keeping life going at all costs, is now understood to be a principle for decisions about end-of-life care. The ideal of the dignity of self-determination that undergirds the doctrine of informed consent is transformed by the medical profession into a tool to make reference to the passage between life and death and to help patients arm themselves for the event. (Llovet 2012, 221) Alongside seeing the legal requirement for informed consent increasing the potential for rationalizing more and more of the lifeworld, therefore, we note here another development. The medical profession has moved to see death as that which needs to be integrated into the discourse on care for the person and not as an enemy of medical intervention inspiring doctors to display heroic efforts to stave off what is inevitable. Llovet’s analysis of cases (where doctors oppose the wishes of the family) is an example of the way the medical profession integrates the spirit or principle of human dignity behind the regulation for informed consent. As a principle, human dignity transcends the life and death distinction. One can live and die with or without dignity; keeping a somatic body alive is no longer the sole focus of medical discourse. Modern medical technology has the capacity to maintain “the vegetative functions of the organism” with the consequence of turning “the person into a link in the chain of causal processes” (Gadamer 1996, 62). The idea of human dignity that grounds the practice of informed consent, on the other hand, sustains a vision of an agent as self-determining in relation to self, others, and society. The notion of care here is transformed from a negative conception (keeping a person alive) to a positive conception (well-being), resting on a notion of dignity that collects life with death. In this sense, dignity can be understood as an example of one of the principles with the capacity to overcome the contradiction between life and death (Bonner 2011).

Canada, informed consent, and the right to refuse treatment In Canada it has recently been accepted by the Supreme Court and it has, in turn, been incorporated into the Canadian Medical Association governing policies that informed consent includes the right to refuse even life-saving treatments.1 As the CMA puts it in their official policies: “A competent person has the right to refuse, or withdraw consent to, any clinically indicated treatment, including life-saving

End-of-life conflicts 77 or life-sustaining treatment” (Canadian Medical Association 1995, 2; quoted in Llovet 2012, 132). As Llovet notes, the decisive qualification on the idea of personhood is competence. And yet, the very capacity of medicine and medical technology to keep a body alive no longer means that a person is automatically competent. It is precisely these enormous technological advances, with their goal of the artificial preservation of life, which reveals the absolute limit of what we can achieve. The prolongation of life finally becomes a prolongation of death and a fading away of the experience of the self. (Gadamer 1996, 62) The modern ability to prolong life leads to the patient’s loss of the experience of the self, making the principle of informed consent problematic. If the patient is incompetent, or in Gadamer’s terms has lost the self, how is the idea of human dignity as embodied in the practice of informed consent to be preserved? In the absence of a “living will,” in North America the solution to this problem has been to designate a substitute decision maker. As Llovet (2012, 135) describes it: The need to respect the autonomy of the incompetent patient is affirmed in the Ontario Health Care Consent Act of 1996 in the figure of the “substitute decision maker.” These are persons designated to make decisions for the incompetent patient, decisions that the physician is obligated to follow. The law, which lays down the rules for appointing the substitute decision maker, tends to reserve this role for relatives of the patient. Relatives, particularly immediate family like spouses, parents, children, and siblings are seen by the law as being in the best position to speak to and for the patient’s self-determining wishes and values. Unlike Socrates in the Phaedo, where his wife and grown children (who are distraught by the fact of his impending, if avoidable, death) are dismissed so that he can discuss his vision of the subject in relation to self, others, and society with his friends and students, in contemporary North America immediate relatives are considered to be the best spokespeople for the vision and self of the patient. Of course, this is not an easy responsibility. From the legal [perspective], the choice of life or death ultimately rests with the patient, as long as they are of sound mind. And yet, it is the family who are left to live with the consequences. “Some families don’t even want the patient to know; others do,” Seagrove [one of the founders of Toronto General’s palliative unit] said. Conversely, some patients want to know nothing of their own prognosis but ask palliative to meet with the family and tell them everything including a tick-tock timeline. (Coyne 2014, A2)

78 Kieran Bonner If, as Dr. Downer, another of this palliative care team, says “we are a death denying society” (A2), terminally ill patients, their families, and the medical profession must now face what the culture denies. Conflicts also emerge between doctors and families as to the appropriateness of and need for continuing medical intervention. There are times when the doctor sees that further medical intervention is futile while the family of the patient (the substitute decision makers) desire continued medical intervention. If the patient were deemed to be legally competent, this would not be an issue. As stated by law, if the patient chose to continue medical intervention, though informed that such intervention has a high probability of being futile, such intervention would have to continue despite the assessment of the doctor. Under the principle of self-determination that is the central element of human dignity, the competent patient can choose to withhold consent to an intervention that is promising or choose to insist on an intervention that to all intents and purposes is futile. The patients’ relation to their vision of themselves as subjects, a vision that includes a self-understanding of the meaning of life and death, means that this decision is theirs to make. In cases where the doctor is seen as more than a technician and the patient is seen as more than a bearer of a fatal illness, “an individual partnership between the doctor and patient” (Gadamer 1996, 172) can come into play, implying a conversation on the utility and consequences of medical intervention in relation to self, others, and society. Two days after her husband’s death, Irene called Reynolds [another palliative team member] to thank her and to apologize for rejecting the palliative team early on. She told the nurse that because of their work, her husband was able to tell her things he had been afraid to say, and so was she. “There were no more questions left.” (Coyne 2014, A2) Of course, the law does not mandate such a conversation, nor could it. If it happens it is a feature of the resilience of the lifeworld and the “intersubjective meanings, which constitute or ground the institutions and practices in society” (Taylor 1977, 121). In the case of the patient of unsound mind, however, it is the family that is legally deemed to be competent to make the decision. On occasion, conflicts do arise between the wishes of the substitute decision makers and the medical professionals as to the benefit or futility of further medical intervention. While the law gives the family the right to insist on continued medical intervention, doctors, in Ontario for example, can continue to appeal the family decision to the Consent and Capacity Board (CCB), which gives the final adjudication. That is, the law anticipates that some decision makers will, for whatever reason, fail to do “what the patient would have wanted.” It is because of this that the Health Care Consent Act establishes that all decisions made by proxies are subject to challenge, review and correction by the Consent and Capacity Board. This is an independent provincial tribunal composed of lawyers, psychiatrists

End-of-life conflicts 79 and members of the public with a mandate to protect the “dignity and autonomy of the individual” and his or her right to choose “whether to take treatment” (Consent and Capacity Board 2010, 2). The law relies on the physician to guard and protect the autonomy of the patient, as doctors are given powers to police the actions of substitute decision makers and to challenge those decisions that are thought to violate the patient’s will. (Llovet 2012, 140–1) As an example, let’s look at the following case from the Consent and Capacity Board adjudication in 2007: [The physicians] said E.J.G. was suffering even if he could not feel pain or discomfort . . . [The doctor] distinguished between pain, which E.J.G. could not feel, and suffering, which she described as something E.J.G. might endure in an existential sense in response to invasive but futile procedures . . . [As the Consent and Capacity Board goes on to say] in determining E.J.G.’s well being, we were entitled to consider the constant invasions and humiliations to which his inert body was subject. At some point those factors overrode the presumption in favor of continuing life. (Consent and Capacity Board 2007, 11, 22; quoted in Llovet 2012, 156) Here the patient’s doctor, in opposing the wishes of the substitute decision makers, makes the case for including an existential dimension in the assessment of wellbeing: despite not feeling pain, there was the “humiliation” to E.J.G. when his inert body was subject to “invasive but futile procedures.” Here we can see that the doctor in this case recommends that the wishes of the substitute decision makers be overridden on the grounds of avoiding “humiliation” to EJG’s inert body, that such a humiliation was an offence to his dignity. The Board, in agreeing with the doctor’s assessment, in effect says that the patient’s dignity in this case favors not intervening to keep him alive. The notion of well-being as against vegetative life now explicitly includes the idea of human dignity and it is interesting to see instances of the medical profession, and in this case the Consent and Capacity Board, collect life and death around this principle. Life and death no longer represent an either/or but rather are collected by notions of “dignity,” “whole person,” and so on, principles, as the work of both Blum and McHugh (1984) and of Arendt (1961) would describe them (Bonner 2011). In the Consent and Capacity cases documented by Llovet, the medical profession implicitly acknowledges an ethical dimension to care, that care involves more than the somatic. It may be that modern technological developments, with its great power to keep a body artificially alive, has created an ethical collision (Blum 2003) that forced the medical profession to come to terms not just with what they are treating but who they are treating, not just EJG’s body but EJG the

80 Kieran Bonner person. The particularity of patients as persons, and the doctor’s need for competent patients to describe how they feel, is the necessary taken for granted ground of the doctor–patient relation, a taken-for-granted that can be realized, exploited, or rationalized. And while it may be argued, as it has by Gadamer (1996), that the dignity of a person is phenomenologically inherent to the collaborative doctor–patient relationship, it is interesting that the healthcare system (to use a term from Habermas) seeks to take this orientation on board.

Human dignity and the citizen as a bearer of rights This brings me to one of the limitations of Llovet’s otherwise measured and reasonable analysis. All of the cases covered in his paper are responses to conflict (whether between the doctor and the patient in the case of the emergence of the demand for informed consent, or between the doctor and the next of kin in terms of spokespersons for the rights of the patient). That is, his paper is peopled with various actors, whether patients, families of patients, doctors, courts, and Boards of Consent and Capacity. The courts and the Consent and Capacity Board (CCB) become players when conflicts arise between the substitute decision makers of patients and patients’ medical caregivers. The CCB does not become a player in the drama if the patient’s doctor and family are able to come to an agreement, as shown with the Reynolds example above. The research material (data) Llovet uses to analyze and make his contributions to knowledge is data that emerges from court or board hearings; this material speaks to a situation where particular agents in society (doctors, patients, and the patient’s family) are in conflict with each other. It is precisely for these reasons that courts and the CCB are needed so that conflict can be resolved within the law. The resort to the law speaks not only to families, doctors, patients, appellants, and defendants but also to the idea of the rights of citizens. As Llovet’s research material emerges from such conflicts, it cannot be said to be representative, not in the sense of survey methodology but in the sense of the community that the intersubjective meanings above constitute, a social and political community, as it were. In other words, the community within which the intersubjective meanings, resting on a very particular vision of a subject in relation to self, others, and society, is sustained in one way through ordinary and collaborative doctor/substitute decision maker relations and is sustained in another way when conflicts have to be resolved in a legal fashion. These particular ways shape the nature of research material, and Llovet’s in particular. Research material that emerges out of a collaborative relation between doctors and substitute decision makers is different than research material that emerges out of conflict between such actors. To be able to examine and draw conclusions from such research material one must also seek to understand the mediating ground that shaped the nature of this research material. That mediating ground is the resort to the CCB in the case of a conflict, and therefore the forum the law creates to resolve conflicts. Unlike the health system, the concern of the law is with the right of citizens.

End-of-life conflicts 81 For Arendt (1994), the citizen is first and foremost a bearer of rights. What Arendt points to here is the idea of a political community, where members need to recognize the claims each makes on the other. The protection of the patient by law, through informed consent, says that citizenship concerns precede and are prioritized over health concerns. But what do citizenship concerns mean? The patient, as a citizen, has rights. These rights are developed within the context of the patient–doctor relation just as the rights of someone charged with a criminal act are played out in the context of law and crime. In the liberal democratic society of the cases above, laws are formulated in terms of the autonomy of the person. As Llovet (2012, 138) describes it, the law gives absolute precedence to patient self-determination, as substitute decision makers are required to follow the wishes that the patient declared to have when still competent. That is, the substitute decision maker is required to “follow orders” and simply execute the will of the patient. There are two ways that we can understand this resort to the law and what the law rests on. We can see them as pointing to a liberal or neoliberal individual autonomy, a notion of community that reaffirms social contract theory, a theory that imagines rational independent individuals coming together to form community on the basis of enlightened self-interest, as described by Taylor above. In this case, the wishes, the values, and the beliefs of individuals are their individual preferences. Under this idea and as part of a liberal democratic system, all these preferences are fundamentally equal before the law. The patient, as a citizen, is free to consent to medical intervention and, under the requirement for informed consent, needs to be informed in order to be able to make an informed choice. Here we have a notion of democratic citizenship, which endows the citizen with rights that limit the rule of expertise in medical decisions. As Llovet (2012, 125) notes, many practitioners remain suspicious of the notion of patient autonomy. Goldberger et al. (1997), for example, propose that full risk disclosure, a requirement of informed consent, is bad for patients because it raises their anxiety levels, which may in turn have adverse medical consequences. As highlighted throughout Llovet’s paper, the law asserts patient autonomy, unless such autonomy is demonstrably dangerous to the collective, and there are no collective ways of moderating these preferences as that would contradict patient autonomy. In many ways, his work points out the tension and difficulties that such a conception of the agent (whether the agent is the substitute decision maker, the legal system, the incapable person, the medical professional, etc.) encounters when faced with ordinary practical dilemmas that have to be resolved for all practical purposes. The discourse of human dignity that the initiative for informed consent introduced, an initiative resisted by the medical community as a limitation on the authority of their expertise, is now used by the medical

82 Kieran Bonner profession to limit the wishes of the immediate family. While Llovet’s work is measured in its analysis, it implies that this particular drama is of a Hobbesian type of struggle for power between patients, doctors, families, and the law. The various developments, like the requirement for informed consent, are then seen as instruments and tools that help one agent over another to achieve power: My analysis concluded that by relying on the rhetoric of individual self-determination, medical professionals are able to make the practice of anticipatory mourning normative, which gives them a powerful tool to effectively control and disarm dissent when relatives of the (unconscious) patient insist on the continuation of life-saving and life-sustaining treatments. (Llovet 2012, 222) While this is certainly a strong argument, it does have implications that need to be addressed. The Hobbesian struggle implies that the issue is a power struggle and that those with the most powerful instruments or tools win. Of course, empirically speaking this tends to be true. However, this formulation marginalizes the ethical issues involved and it does so by contradicting the intersubjective understandings that the formulation rests on. Given that Llovet shows the conflicts, problems, and struggles that the idea of the autonomous individual practically causes, how does it happen that his work reproduces the problem he identifies?

Citizenship and intersubjective understandings To see patient autonomy in isolation from the law that so constitutes the patient is to treat as a resource the very liberal democratic theory that his analysis legitimately calls into question. As Taylor notes above, such an approach takes for granted, or more accurately treats as an untopicalized resource, the intersubjective meanings that its claims rest on. The vision of subjects in their relation to self, others, and the world is assumed and the tensions and contradictions that such a vision reproduces are both relied on and denied; the rational autonomous “I” is treated as if it were original or first, while simultaneously it both rests on and denies the “we” that such an intersubjective understanding needs. In this sense the truth claims that the paper establishes are one-sided. It is not that they are untrue or false but unduly narrow. If taken to be the “whole truth,” a distorted picture of the reality of the lifeworld emerges, a distorted picture that sees the need to struggle for power rather than the need to understand and theorize as first (Bonner 1998, 58–82). While part of the truth of the situation is certainly the power play between the various players, to see that as the whole distorts the relation to the lifeworld that such a view contradicts and rests on. When Llovet says “the law gives absolute precedence to patient self-determination” (2012, 139) vis-à vis substitute decision makers, this is a law that rests on intersubjective understandings that are reflected, modified, confirmed, and/or changed as the community articulates changes. And

End-of-life conflicts 83 while legally speaking it is true that “any decision made on behalf of the patient is the patient’s will expressed by a third party” and that therefore “the substitute decision maker is in this context nothing less (and nothing more) than the one who conveys to the medical team the unadulterated will of the patient” (Llovet 2012, 139–40), to interpret these solely in the context of the autonomy of the patient and/or citizen, and so, to treat these decisions as first or original leaves unarticulated the intersubjective meanings such an interpretation requires. More importantly, it leaves concealed the points at which the vision of the subjects and their relation to others and the world can be made subject to discourse. In the first case, the autonomous individual or capable person can express his wishes and they become the basis for the decision. If they are clearly expressed (Llovet 2012, 138) the duty of the doctors, substitute decision makers, and the courts is to carry them out. That is, all other agents are mere executors for the person’s wishes. As the paper articulates very well, such a view raises many dilemmas and situations for dispute in terms of who is the guardian of the incapable patient’s wishes, who has to moderate when faced with conflict (the law and the CCB), and so on. Access to the patients’ wishes is an irremediable Grey Zone that involves conflict and mediation and resolution. When intersubjective understandings become a focus of the research and analysis, however, the truth of the horizon of the situation widens. Llovet has established that there are many parties to the decision to be allowed to die, the patient, the patient’s family, the medical profession, and ultimately the law. However, the law takes precedence, as all the other parties have to act within the law. The law has processes for making decisions that are different than medical science knowledge or the personal knowledge that comes from being an intimate or relative of the patient. The law allows for dispute to emerge between the parties and has processes in place for the dispute to be resolved. Laws point to the boundaries of the intersubjective community within which political thinking operates and that political thinking reinforces. The role of the law in these endof-life conflicts is when the justice of the parties in relation to the community becomes an issue. If so, we can read the judgments delivered by the CCB not only as adjudications in the struggle between patients and doctors, but also as attempts to think through the problems that end-of-life issues raise, then we can read them also as a nascent appeal to political thinking with regard to the “common reference world.” Political thought is representative. I form an opinion by considering a given issue from different viewpoints, by making present to my mind the standpoints of those who are absent . . . being and thinking in my own identity where I am not. The more people’s standpoints I have present in my mind while I am pondering a given issue, and the better I can imagine how I would think and feel if I were in their place, the stronger will be my capacity for representative thinking, and the more valid my final conclusions, my opinions. (Arendt 1961, 241)

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In this quotation, Arendt is explicitly drawing on Kant’s enlarged mentality, a concept he developed to account for the faculty of taste. As is well established, Arendt used Kant’s concepts to develop the particularity of political thinking (1958), in distinction from what she saw as philosophical thinking (1978; 2003). The adjudications of the CCB are judgments that can be treated as attempts at political thinking, that is, as attempts to bring the doctor’s and substitute decision maker’s “standpoints [to] mind while . . . pondering a given issue” (Arendt 1961, 241). As such, they can be read as trying to imagine what they “would think and feel if [they] were in the place” of the family and doctors, and, insofar as they do that, they can be treated as examples of “representative thinking” (Arendt 1961, 241). Arendt provided us with an example of what it means to think through a judgment by offering a way to understand and justify the judgment of execution against Eichmann (Arendt 1965, 277–9). She argued that while the decision of the judges to find Eichmann guilty and to sentence him to death was right, the justification they provided for their decision was not adequate to the “justice [that] must be seen to be done” (Arendt 1965, 277). In the judgment she offered, she made a case for Eichmann’s execution, that can now be formulated as resting essentially on his evil, even if banal, vision of his agency and his relation “to others and to society” (Taylor 1977, 118–19.With that precedent and to attempt such thinking, let’s work through one of the judgments of the CCB.

Judgment, political thinking, and the parental maxim “never give up” We accept that the patient told her children never to give up. Encouraging perseverance and determination is something that most parents do. There was never any discussion between the patient and her children as to what the general admonition to not give up might mean in the context of the circumstances that she was now in. Did Ms. P. believe that not to give up extended to performing CPR on an unconscious person whose organs were shutting down? (Consent and Capacity Board 2005, 10; quoted in Llovet 2012, 148) This judgment shows the place of the platitude “never give up” in parent–child relations. Part of parenting involves encouraging perseverance and determination, character traits that are necessary to engage the vicissitudes that life will inevitably bring. It is the kind of encouragement given when one’s children lose a game, did not get selected for a part in the school play they competed for, and so on. That is, this advice is to encourage and embolden people who are tempted to despair in the face of adverse circumstances. Encouraging perseverance and determination is important for character building and these traits themselves are indications of character. While in this case we have advice from one mother to her children, such a platitude finds its intelligibility in the context of a discourse or intersubjective understanding on the importance of character to deal with adversity.

End-of-life conflicts 85 This discourse recognizes the temptation to resign, to give up, and to surrender in the face of adverse circumstances and seeks to develop, in the one subject to the cliché, the resources to overcome such a temptation. If it appears that adverse circumstances invite resignation, the cliché points to the possibility that such circumstances do not determine the response of the actor. Finding the courage, the willpower, the faith and hope to go on when circumstances say otherwise, is a possibility. However, from the CCB perspective, this maxim begins to look absurd in the context of “performing CPR on an unconscious person whose organs were shutting down” (Consent and Capacity Board 2005, quoted in Llovet 2012, 148). If the deep focus of the maxim is character, then the immediate family’s application of the maxim in this case begins to look like denial of circumstances rather than responding to them. Denial is inimical to this idea of character. Character means facing and acknowledging adversity, not allowing it to determine one’s actions. Denial is a refusal to acknowledge adversity and, as such, can be as determined by circumstances as by resignation. The unstated intersubjective understanding that the CCB is drawing on is the real distinction between denying and determining to overcome adversity. In this case, the adult children are about to lose their parent, a loss that will create a hole in their life. The deep pain this loss will cause inevitably needs to be suffered, borne, in Weber’s terms, as itself an instance of character. Denial ends up undermining the point of the encouragement that the maxim “never give up” seeks to create. One could by implication ask not only about the importance of the maxim but also the way it was taught to the children that they would now seek to use it against the principle the maxim seeks to serve. That is, the maxim can be used to deny reality or to face reality and its use is particular. Regardless of this mother’s use of the maxim, the adjudicator’s job is not to now teach the family what the maxim means but to judge the conflict between the doctor and the substitute decision makers. The CCB in effect is saying that using the maxim to perform “CPR on an unconscious person whose organs were shutting down” is to use it to deny reality and so draws the distinction between dealing with adversity and loss and denying it. The validity of the CCB’s judgment rests on how well it represents the intersubjective understanding of the community, a judgment that privileges the patient as a citizen with rights. In this case the CCB assesses the family’s wishes to continue with life-saving treatments and, while sympathetic to the pain of the loss they will feel, rules against the action they propose. However, political thinking means taking up for discussion the taken for granted intersubjective understanding of a distinction between facing adversity and denying adversity, a distinction that the maxim “never give up” both speaks to and glosses. The CCB adjudicates in the case of a conflict, in this case between families of the patient and the doctors treating the patient. As such, the law provides a forum, the CCB, for articulating the intersubjective understandings. As already stated, the cases this forum hears are not representative in Arendt’s sense of the term, in the sense that they cannot be said to be politically valid. Precisely because

86 Kieran Bonner they are legal cases where conflict needs to be resolved, rather than cases that work out the issue through dialogue between doctors and substitute decision makers, they cannot be taken, without reservation, as key indications or signs of the culture of a society. Insofar as a law provides boundaries to a community, boundaries that rest on intersubjective understandings, then we can imagine many situations where these intersubjective understandings are either agreed with and taken for granted in many other doctor/substitute decision makers situations or are articulated in that situation without requiring the forceful intervention of law. In fact, “never give up” can now mean that the family needs to work out how to go on with life and action in the world in the absence of a loved one. Because the profound loss of a mother invites despair and nihilism, the resources to face adversity and loss that the “never give up” maxim is oriented to in the first place must now be called on. It is precisely in this kind of case where the teaching that the maxim encourages faces its greatest test. Dignity in this sense seeks to acknowledge the loss in seeking to not let it overwhelm, to resist its temptation to be rendered silent, and in the case of Socrates (but also it should be said, Jesus), to invent or tell a story that brings home to roost the unwelcome fact the loss that death brings. This articulation is the work of the kind of therapeutic pedagogy that Socrates engaged with his friends, colleagues, and students in the Phaedo (Tarrant 2003). Within a court system or even a medical system, such a therapeutic pedagogy risks sounding paternalistic or even cavalier with regard to the pain the profound loss creates in the family. But, as is argued here, it is central to the framing of the analysis of such cases, if we are to keep political reality in perspective. Our entry into the world is contingent and our leaving is inevitable. The beginning is accidental and the ending unavoidable. Gadamer (1996, 23) reminds us of how the consciousness of the living still experiences a fearfulness before the mystery of death, a shuddering before its sacredness, and there is still something uncanny in the silence which accompanies the final parting of someone who was even just now among the living. This fearful shuddering is what must be faced in the loss of a loved one, a shuddering that the maxim never give up, as parting words, speak to the Greek idea of the psyche “as something in which mutually antagonistic moments [life and death] are entwined” (Gadamer 1996, 68). Overall, and reflexively, as the CCB cases show, the will of the patient has to be thought about and thought through in the context of the constitutive intersubjective understandings that the community rests on. The will of the patient or of the autonomous individual is an expression of wishes that themselves rest on, and work over, constitutive understandings: they are not so much orders to be executed as spurs to think through what it means to care for the patient in this case as a person whose unique gesture, in Arendt’s words (Arendt 1992, 686 as cited in Kohler and Saner 1992), are about to die with the person. And if it was

End-of-life conflicts 87 the case, as the CCB judgment notes, that the admonition was never discussed in relation to the circumstances these adult children now find themselves in, such discussion shows itself in the promise the analyses of such cases, in all of their necessary partiality and incompleteness, offer. This is the promise of the ongoing, never-ending conversation in the face of death, a continuing commitment by the living not to give death the last word, a conversation, in this case collaboratively initiated by Llovet’s analysis (McHugh et al. 1974).

Note 1

Canadian courts have recognized a common law right of patients to refuse consent to medical treatment, or to demand that treatment, once commenced, be withdrawn or discontinued (Ciarlariello v. Schacter, [1993] 2 S.C.R. 119). This right has been specifically recognized to exist even if the withdrawal from or refusal of treatment may result in death (Nancy B. v. Hôtel-Dieu de Québec (1992), 86 D.L.R. (4th) 385 (Que. S.C.); and Malette v. Shulman (1990), 72 O.R. (2d) 417 (C.A.)). (Rodriguez v. British Columbia (Attorney General) 1993, 94; quoted in Llovet 2012, 131–2)

References Arendt, Hannah. 1958. The Human Condition. Chicago, IL: The University of Chicago Press. ——. 1961. Between Past & Future: Eight Exercises in Political Thought. New York: Viking Press. ——. 1965. Eichmann in Jerusalem: A Report on the Banality of Evil. Harmondsworth: Penguin Books. ——. 1978. The Life of the Mind. New York: Harcourt Brace Jovanovich. ——. 1994. The Origins of Totalitarianism. New York: Harcourt Books. ——. 2003. Responsibility and Judgment, edited by Jerome Kohn. New York: Schocken Books. Bonner, Kieran. 1998. Power and Parenting: A Hermeneutic of The Human Condition. London: MacMillan/New York: St. Martin’s Press. ——. 2011. “The Illness of Hope, the Cure of Truth and the Difference of Principle: A Reflexive Analysis of Antigone’s and Meursault’s Confrontation with Death.” In Spectacular Death: Interdisciplinary Perspectives on Mortality and (Un)representability, edited by Tristanne Connolly, 43–56. Bristol: Intellect Press. Blum, Alan. 2003. The Imaginative Structure of the City. Montreal: McGill-Queen’s University Press. Blum, Alan and Peter McHugh. 1984. Self-Reflection in the Arts and Sciences. Atlantic Highlands, NJ: Humanities Press. Coyne, Todd. 2014. “Toronto General Hospital Wants to Know: How Do You Want to Die?” The Toronto Star, October 12, A2. Foucault, Michel. 1977. Discipline and Punish: The Birth of the Prison. New York: Pantheon Books. Gadamer, H.G. 1975. Truth and Method. London: Sheed & Ward. ——. 1996. The Enigma of Health: The Art of Healing in a Scientific Age, translated by J. Gaiger and N. Walker. Stanford, CA: Stanford University Press.

88 Kieran Bonner Garfinkel, Harold. 1967. Studies in Ethnomethodology. Cambridge: Polity Press. Habermas, J. 1984. The Theory of Communicative Action: Volume 1, Reason and the Rationalization of Society. Cambridge: Polity Press. Kohler, Lotte and Hans Saner (Eds.). 1992. Hannah Arendt: Karl Jaspers’ Correspondence 1926–1929. Translated by Robert and Rita Kimber. New York: Harcourt Brace. Llovet, Diego. 2012. Public Health, Medicine and the Ideal of Self-Governance: Conflicts in the Modern Culture of Health and Well-Being. PhD dissertation. York: York University. McHugh, Peter, Stanley Raffel, Daniel Foss, and Alan Blum. 1974. On the Beginning of Social Inquiry. London: Routledge & Kegan Paul. Tarrant, Harold. 2003. The Last Days of Socrates: Euthyphro, Apology, Crito, Phaedo. London: Penguin Books. Taylor, Charles. 1977. “Interpretation and the Sciences of Man.” In Understanding and Social Inquiry, edited by F. Dallmayr and C. McCarthy, 101–31. Notre Dame, IL: Notre Dame University Press. ——. 1989. Sources of the Self. Cambridge, MA: Harvard University Press. Weber, Max. 1946. “Science as a Vocation.” In From Max Weber: Essays in Sociology, edited by C. Gerth and C.W. Mills, 129–56. New York: Oxford University Press. ——. 1964. The Theory of Social and Economic Organization. New York: Free Press.

Part II

Biomedicine, social services, and reparation in the postcolony

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4

The time of a life Ethics and cancer care in the case of a young First Nations girl Stuart J. Murray and Tad Lemieux

Is it possible that despite our inventions and progress, despite our culture, religion and knowledge of the world, we have remained on the surface of life? (Rilke 2009, 15)

Introduction In May 2014, near Brantford, Ontario in the Mississauga-Ojibwe reserve of New Credit First Nation, 11-year-old Makayla Sault, living with acute lymphoblastic leukemia, reported that she witnessed the figure of Jesus Christ enter her room accompanied by two angels, and, with hands outstretched, assure her that she was healed of her illness. Makayla had, until this time, been undergoing a series of chemotherapy treatments on the advice of her oncologists at the McMaster Children’s Hospital in Hamilton, Ontario. In a videotaped letter, posted online on May 13, 2014, Makayla read the following in the presence of her Band Council: I know that what I have can kill me, but I don’t want to die in a hospital . . . When Jesus came into my room, [he] told me not to be afraid. So if I live, or if I die, I am not afraid . . . Jesus told me that I am healed, so it doesn’t matter what anybody says. God, the Creator, has the final say over my life. (Ojibwe Child Refuses Chemo 2014) And with that, Makayla withdrew from what her physicians deemed to be potentially lifesaving treatment in favor of pursuing Ongwehowe Onongwatri:yo, Indigenous medical therapies administered by a traditional healer on the Six Nations. This chapter offers a critical analysis of the colliding ethical claims to life and to care in the case of Makayla Sault within the frame of neoliberal biomedicine and its temporalities of governance. Reading the widespread media coverage, we suggest that Makayla’s refusal to consent to further biomedical therapies may be read, among other things, as a counter-hegemonic threat to the neoliberal management of bios, a threat that effectively destabilizes the biomedical deferral of mortality, its discourse eliding the proximity of death to life, and the extent of its authority over the time and treatment of human bodies. It is not simply

92 Stuart J. Murray and Tad Lemieux that religious faith or cultural beliefs clash here with our widespread faith in biomedicine, as it might first appear. Indeed, these discourses themselves are imbricated in (neo)colonial projects at the intersection of religion, traditional Aboriginal cultures, biomedicine, capital, law, and the politics of self-determination and sovereignty. After all, it was often in the name of Jesus that scores of Aboriginal children were stolen from their families and institutionalized by colonizing forces—the same Jesus invoked by Makayla in her refusal to submit to biomedical institutions and treatments, which for some, surely share in that colonial legacy. Claims to and, frequently, on behalf of the body in question raise ethical challenges for conventional notions of autonomy and informed consent, including an individual’s “capacity” to refuse treatment, and the right to live, and to die, in one’s own time and place. In what follows, we ourselves refuse to pass judgment on the case of Makayla Sault, but, employing her case as a site of contestation, consider rather the manner in which neoliberal biomedicine relies on the fiction of an ethical “capacity” imagined to be the inalienable property of the reasonable individual, and all that such “reasonability” entails, when faced with a diagnosis of cancer. Our reading advances a provisional concept of ethical relationality that does not seek recourse in increasingly neoliberal instantiations of autonomy, reasonability, and consent; nor does it accept “cancer” as an objective reality grasped best—or only—by biomedical rationality. As S. Lochlann Jain (2013, 4) argues, cancer is “[a]nything but an objective thing, cancer can be better understood as a set of relationships—economic, sentimental, medical, personal, ethical, institutional, statistical.” We seek, then, to surface some of the ways that Makayla’s refusal problematizes such relationships. Following Jain (2007), this chapter gestures instead toward an elegiac politics of the living and a conception of voice that, in speaking, refuses to fetishize (neo)liberal individualism and the biomedical “untimeliness” of an individual’s death. It is within the context of an elegiac ethics, we argue, that a robust understanding of care might emerge: one that exceeds the suasion and “capacity” of ethical codes and guidelines to suggest instead a care that must wrestle with claims that are ultimately indeterminable and temporally ambiguous. Finally, in refusing to pass judgment on the case of Makayla Sault, we stand in opposition to the many commentators who have passed judgment on her, her family, and her community: rather, we question the conditions and coordinates under which it is deemed permissible, if not morally requisite, to speak for or on behalf of others whose voices we might prefer not to hear.

“Capacity” and consent: the backlash against Makayla’s refusal Makayla’s public refusal elicited a biopolitical backlash from her physicians and the mainstream news media. What followed was a series of institutional threats to force biomedical treatment on Makayla, echoed and rebounded by the subtle, though sometimes quite explicit, scorn and derision of her refusal. A series of interviews with Makayla and her family were held to determine the nature of the

The time of a life 93 refusal to consent to medical treatment, where it was claimed by the family that one particular oncologist ridiculed the efficacy of Indigenous medicines by calling them “100 percent ineffective,” stating that the support of such medicines should result in prison sentences (Garlow 2014). The language of the Canadian Cancer Society (2014)—which refuses to employ the term “treatment” for Indigenous medicines, opting instead for “healing practices”—offers some hint of a context for these comments in its assessment of traditional Indigenous medicines, stating: “Although First Nations traditional healing practices have been valued by their people for as long as oral tradition has been alive, there is virtually no research on the effectiveness of these methods.” In this contest of refusals, Makayla’s refusal is dismissed, both by physicians and across the mainstream media, as the uninformed speech of primitive oral traditions or mere “values,” whereas the Canadian Cancer Society is authorized by the literate knowledge of advanced bioscience or “facts.” In an advanced neoliberal democracy, it is clear which worldview will hold moral sway and intervene into lives, even if its positive knowledge fails to encompass the moral value of that life as a life lived. This much remains beyond its ken. Makayla’s medical service providers at the McMaster Children’s Hospital reported her case to the Brant Children’s Aid Society (CAS) to determine, using the language of the Health Care Consent Act (Government of Canada 1996), her “capacity” to consent to the refusal of continued chemotherapy treatments. On May 20, 2014, Makayla was deemed capable by the CAS and no further legal actions were taken against her and her family. Significantly, while the Health Care Consent Act does not specify a minimum age of consent, in Canada there is legal precedent for deeming a minor incapable to refuse medical treatment in the context of a religious claim, as in the case of Jehovah’s Witnesses, for instance, where minors have been required to undergo lifesaving blood transfusions.1 In Makayla’s case, however, it appears that religious faith, while ostensibly the grounds for Makayla’s videotaped refusal, was not so much at play when authorities deemed her to be capable to make such a momentous decision. As a refusal on religious grounds, her public statement is logically inconsistent and contradictory. Moreover, both her mother and father are pastors in a Christian evangelical church, which might reasonably have raised concerns about who exactly is consenting in the refusal of treatment for this 11-year-old girl. We have no documented record of the interviews that took place between the CAS and Makayla and her family, nor do we have hard evidence of how the CAS arrived at its decision. On the surface, however, while there might be compelling reasons to reject Makayla’s “capacity” because she may have been unduly influenced by her parents’ religious faith, denying her capacity on these grounds would have obligated the state to intervene, and thus would have raised the further question of whether the state has the right or duty to remove an Indigenous girl from her territory, and to force treatment upon her. In this reading, Makayla’s Indigeneity becomes the salient locus of capacity—or more precisely, the locus of the CAS’s refusal to refuse to attribute capacity to Makayla. Rightly or wrongly, unwilling to enter into a contest over the rights of Indigenous persons of any age, the CAS

94 Stuart J. Murray and Tad Lemieux must by default deem Makayla to be capable to refuse treatment, however incapable—legally or ethically—she may be. Some may argue that the CAS acted surreptitiously but in good faith to tacitly honor a First Nation’s sovereign claim, but something else is taking place in this ruling, something slightly less magnanimous. In effect, the CAS anxiously produced and bestowed individual “capacity” when it made its ruling. Remaining silent on the question of Indigeneity, this administrative–legal body, operating on the authority of the state, refuses to give voice to an Indigenous claim, while nonetheless assuming the sovereign power to grant or withhold the very “capacity” by which any such claim could be recognized in the first place: You have the right to make this claim, so to speak, as long as we first bestow upon you this right, and accord you this standing in the eyes of the law. In other words, your claim is a claim always and only by virtue of our prior act of recognition, and remains ours to bestow or withhold. You are beholden to us. Indeed, if such a power lies with the state, then the very notion of individual “capacity,” in its legal valences, relies on the productive fiction of an autonomous, reasonable, (neo)liberal subject—a fiction that remains the sole privilege and purview of state discourse and power. This is true no matter the age of the claimant, but becomes all the more conspicuous in the case of an 11-year-old. If the grounds for “capacity” in Makayla’s case are weak, as they arguably are, it might nevertheless have proved a safer bet for the CAS to deem Makayla herself to be autonomous, reasonable, and free to decide, rather than become embroiled in a contest of community will and Indigenous sovereignty. That is, although Makayla’s Indigeneity seems to have been the deciding factor in her case, (neo)liberal state institutions would undermine their own authority, and the mechanisms of that authority, if they were to admit that “capacity” belongs also— or perhaps even primordially—to a people on the basis of shared tradition, culture, or ancestral heritage. If the state embarked on such a debate, it would expose the fictional nature of individual “capacity,” along with the fragile authority—and arbitrary violence—by which the state itself produces and polices individuality as an instrument of governance, if not subjugation. The tension between the claims here becomes all the more palpable if we consider in stark terms the consequences of acknowledging that peoples—and not individuals—might be the bearers of certain rights or “capacities,” particularly as these continue to be conceived and fashioned on the basis of Enlightenment Western individualism and law. The law is hamstrung, in a sense, by its own language, its own conceptual authority, and on its own founding principles, which are meant to apply universally, and yet come up against cases like Makayla’s where much more than the life of an individual hangs in the balance. The United Nations Declaration on the Rights of Indigenous Peoples, to which Canada is a signatory, complicates the medico-legal paradigm of ethical individualism in provocative ways, and yet this document was rarely invoked in the public discussion that followed Makayla’s refusal. How is the law to incorporate a UN Declaration (2008, Article 24.1), which states that Indigenous persons cannot be forcibly removed from their traditional territory, or the claim that they “have the right to

The time of a life 95 their traditional medicines and to maintain their health practices, including the conservation of their vital medicinal plants, animals and minerals”? Indeed, the Declaration states further that: “Indigenous individuals also have the right to access, without any discrimination, to [sic] all social and health services” (2008, Article 24.1). This suggests that whole peoples can be the bearers of rights, and are free to invoke a sort of capacity that does not refer to individuals, but rather problematizes this legal category as belonging to a worldview that is not and never really was universal, timeless, and True. What the UN Declaration might mean in Canadian legal and ethical practice is far from clear (it is certainly not legally binding), though it was clear that trespassing upon First Nation territory to forcibly remove a young girl from her family would have been met with resistance and declarations of war from First Nations everywhere.2 In an opinion column written for the Hamilton Spectator on May 31, 2014, Juliet Guichon, a legal scholar, along with three pediatricians of her cohort in the Faculty of Medicine at the University of Calgary, contend that “[a] young Canadian girl is being denied a good chance for a cancer cure because she is aboriginal” (Guichon et al. 2014). Arguing that Makayla is too young to consent, Guichon and her colleagues, in their characterization of the CAS’s decision, describe the uneasy tension between the community that Makayla belongs to, and the individual—here a “young Canadian,” a citizen—who is managed, statistically described, ordered, and constituted as a subject of neoliberal biomedicine and law. In an argument that is either blind or indifferent to Canada’s colonial history, they claim that it is tantamount to discrimination for our medicolegal institutions to fail to provide (forced) chemotherapy treatments for Makayla, and that this discrimination is an injustice, it would seem, that trumps the rights of Indigenous persons to their traditional medicines. Indigenous persons’ right to “access . . . all social and health services,” “without any discrimination,” as the UN Declaration puts it, is here rendered as their obligation, a responsibility rather than a right. That is, it appears for the authors that the community should be the locus of consent and capacity, as a proxy for the individual who is incapable of consent, and yet Guichon and her colleagues undermine that capacity—the community only possesses such capacity, it would seem, when it makes a decision that is concordant with the authors’ and with the medico-legal establishment they represent. In other words, in their reading the community has refused to exercise capacity, and, in its decision, has abrogated its right to make a decision, or has proven itself preternaturally incapable of doing so when it too refuses to force Makayla into treatment. Guichon and her colleagues choose not to invoke the UN Declaration, turning instead to the authority of the Supreme Court of Canada, citing legal precedence for the state’s medical intervention in cases they deem analogous.3 They appear to take issue with Aboriginal exceptionalism. Yet there is no mention of the many other historical “interventions,” many of them exceptionally bloody, which might, for a First Nation community, trouble the Court’s authority as belonging to a colonial tradition—indeed, a tradition in which Makayla is co-opted as a “Canadian girl” in need of biomedical salvation and legal sanctions. Nowhere do they ask:

96 Stuart J. Murray and Tad Lemieux What is the “capacity” of the law and its institutions in this case? Whence its capacity to judge, and to bind us to that judgment? And is this capacity not founded in the historical violence that consented to—when it did not altogether sanction— the abduction of Aboriginal children, and sometimes their rape, their destitution, before the law, in the name of Jesus and in the name of the state? If this is the history of its authority, the question of capacity is evacuated of meaningful content, and we are left with the enduring question of the responsibility for life and its relation to the ugly, forgotten, disavowed, history of law. There is, of course, a “logic” to the trite claim that two wrongs do not make a right—that Makayla is being martyred, wrongly, on the altar of her community’s principles and politics, and that by denying her chemotherapy treatments we— however this “we” is constituted—add to, rather than redress, historical injustice. But this is to refuse Makayla’s claim outright, to refuse to hear it on its own terms, including the sovereign claim that is voiced in her name, and the care that is given through the community that loves and embraces her. Such a refusal does not redress historical wrongs, but reduplicates them. Could there be something positive in Makayla’s claim, something we might recognize, however vaguely, in the desire to live—and to die—in one’s own way? Could death be something other than the mere failure to continue to live, by whatever means? The law is decidedly anxious here, which is one reason why it might have reinforced Makayla’s individual capacity, bestowing and then by sleight of hand “recognizing” this capacity, rather than acknowledge the sovereign claim of her Nation. In her own way, Makayla invokes the absolute power of law when she declares, “God, the Creator, has the final say over my life” (Garlow 2014). This declaration stands in contradiction to the manner in which the law has arrogated to itself such theological power in an ostensibly secular context. The law remains unwilling to cede on the question of sovereignty over the lives of its subjects, which is its ultimate power, and a mythic violence that underwrites its authority across the spectrum of social life.

Biomedicine, biopolitics, and sovereign claims Whether Makayla’s community has the capacity to refuse treatment on her behalf, abrogates its capacity, or refuses outright the terms of “capacity” and the authority by which it is bestowed or normatively produced, performed, and policed, her community nevertheless makes a sovereign claim in her name. And while the law might bestow upon Makayla the individual capacity to refuse treatment, we suggest that it does so grudgingly, because it cannot tolerate a sovereign claim that would compete with, and threaten to undermine, its own claims to sovereign authority, universality, and force of law. The sovereign victory of the First Nation is here a silent one, operating spectrally, behind the face of a little girl whose contradictory story—she does not want to die in the hospital, yet Jesus said she is already healed, yet she will turn to Indigenous medicines—is apparently good enough for the law, good enough for the ruse of consensual personhood. Politicolegal battles converge at the site of Makayla’s body, and the wider dynamics become reductively biomedicalized in the popular imaginary: stated simply, in

The time of a life 97 reductive terms her community has failed her by failing to act in her best medical interests. And so her community has, we are led to believe, failed to exercise its capacity—its responsibility—to enact the rule and authority of biomedicine to make Makayla live, or to give her the best chance at life. The irony is that while the CAS deemed Makayla to be capable of refusal, within a neoliberal biomedico-legal context her refusal of treatment is practically illegible, signaling a de facto failure of capacity—for no “capable” person, on its terms, would refuse life or the best chance at life. Within a biomedical context, that is, such a refusal is seen as irrational, issuing from someone who demonstrably cannot make the right choice, and who abrogates the right to belong, recognizably, and to make a claim that could be honored. The sovereign claim of the First Nation, then, is an affront to the consuming logics of biomedicine, which in the wider culture has been naturalized and normalized as commonsense truth. In Foucault’s (2003a, 202) terms, we characterize biomedicine as one aspect of biopolitical state power: biopolitics is “the endeavor, begun in the eighteenth century, to rationalize the problems presented to governmental practice by the phenomena characteristic of a group of living human beings constituted as a population: health, sanitation, birthrate, longevity, race.” Within biopolitics, medicine and law become rationalizing tools for the political organization, regulation, and management of life itself. Today, moreover, we must understand biopolitics in a neoliberal vein, with global proportions and diverse modalities, which is why cancer is not an object but more than ever a complex set of relations. Foucault’s (2003b, 241) early formulation of biopolitics as “the power to ‘make’ live and ‘let’ die” can no longer be understood outside a vast and anonymous global network. It operates to “make live” through technologies, mechanisms, efficiencies, forecasts, statistical estimates, and risk management. It defines, regulates, counts, exposes, and encloses human life on our planet, from Attawapiskat to Athens, from Davos to Darfur: information economies, surveillance, Big Pharma, clean drinking water, famine, HIV, cloning, genomics, and the cancer industry, to name just a few—a diffuse “agency,” an ideology, that is unlocalized and operates through a plethora of loosely connected sites: medical, juridical, social, political, cultural. Through burgeoning governmental and biomedical technologies, the individual’s life now counts first as a biological member of the state’s population, one biopolitical entity among a mass of others, or, as Foucault (2003b, 246–7) sums up, “man-as-species.” Effectively, the “individual” is displaced and becomes “regularized” by “a technology in which bodies are replaced by general biological processes” (2003b, 249). Here, relations of power, and historical “interventions” of all kinds, are invisible behind the biomedical “fact” of cancer. Is it possible, as Rilke suggests, that we remain on the surface of life? The cancer diagnosis constellates around the hegemonic narrative of empirical truth and its realities, where the body is made to live, and meant to live, by whatever means offered by the rules and technologies of biomedical logics. The oftensilenced counter-narratives of life and death, of health and healing, are and must be staged within the scope of a past long left behind and disproven. In the near borderless and faceless mechanisms of neoliberal biopolitics is produced, as a

98 Stuart J. Murray and Tad Lemieux necessary condition of its operation, a trajectory defining a particular form of life and the various expressions, or symptoms, which determine its character as such. Not all lives are liveable. Life itself becomes, both in context and content, the concept defined for and through neoliberal biomedicine and the measure through which bodies are made to live. Thus, the project of neoliberalism is, in part, the task and management of pre-empting death and death’s presence-in-life, foreclosing upon any “decision” that is not made in the name of “life itself.” Life, as manufactured and managed, enforced across a population in part by the common-sense principles coded into the (neo)liberal subject, operates as an object of futurity whose meanings are constantly deferred by biomedical progress and treatments. Cancer “becomes” the present, but biotechnology and its concurrent narratives of life constantly work to project this idea of living into the future and death into the underside of the abstract silence of the percentage point promising that deferred, healthy, life. In this capacity, neoliberalism operates outside of the present and out onto a belated future that becomes both predictively predetermined and, yet, never operationally present. It relies on statistical paradigms and predictive rationalities projected into the realm of potentiality, the determinacy of the future, to dismiss or defend against the proximity of death in the narrative of biomedical and biotechnological progress. “Death,” within a biopolitical frame, must here be understood as distinct from “letting die.” It is as if death does not come for those who are made to live: and those we “let die” do so, as it were, of their own accord, due to their constitutive biological failures, weaknesses, abrogations. These deaths, if we can acknowledge them as deaths, are disavowed, dismissed as lives that did not quite count as life, that did not make it, that were constitutively unlivable. Foucault suggests that in the biopolitical State, “making live” and “letting die” are intimately connected, each the obverse of the other—“letting die” as the consequence, and the condition, of “making live,” much as we might callously see the deaths produced by pharmaceutical trials as the “collateral damage” or “negative externalities” of making live. In a controversial lecture, Foucault (2003b, 254) argues that the power to “let die” occurs primarily as an inscription of racism into the mechanisms of its power: Racism makes it possible to establish a relationship between my life and the death of the other that is not a military or warlike . . . but a biological type relationship . . . [T]he death of the other, the death of the bad race [is] something that will make life in general healthier: healthier and purer. Faced with the refusal to “make” Makayla live, the medico-legal discourse— naturalized and popularized in the mainstream press—props up the health of neoliberal biopolitical ideology against the “impurities” of other ways of understanding life, health, medicine, and death. And in doing so, the ontology of biomedicine is posited as a purity of progressive thought, a causal line out from the murkiness of the primitive past and into the future informed by an ever-increasing biotechnological mastery over the terms of mortality. These kinds of impurities are “allowed” to die—though always in the name of proliferating a certain form

The time of a life 99 of life—and with them, their own frames, their own narratives, their own concepts of life, the times of their lives, all while subject to a reinforcing ridicule acting the part of the ethical caregiver who has been refused the capacity to intervene, refused the capacity to defend the purities of dominant ideologies by enforcing the law of the land. The White Man’s burden. If Makayla dies from lack of biomedical treatment, she will have been “allowed” to die, almost passively—she will not have been killed, but will have died due to the constitutive failure of her Indigenous community to exercise its moral capacity to choose life, and to make her live, in the terms and through the technologies that are generously proffered. This, in any case, is the implicit narrative. Our argument, therefore, hopes to suspend for a moment, to break free from, the constrictive onto-logic of neoliberal biopolitics, which has been normatively inscribed today as common sense to the population it authorizes and proliferates. Our purpose is to explore the ethical valences within Makayla’s refusal of the biopolitical program, and to expose the reductive constraints that define ethical care in the era of neoliberal biomedicine. To do so is once again to expose as well the fragility of our own implicit narratives, borne by a faith in the efficacy and causal circuitry of biomedicine, and the fractiousness of the perverse narratives of biopolitical truth and biotechnological progress, here operating hand-in-hand with the legal and administrative bodies that render judgments on capacity and care. Makayla’s story presents one challenge to the trajectory and determination of the neoliberal conceptualization of life, a gaunt choreography acted out at the anxious limits of its reach, and the practiced course extended out and within the interconnected web of private and public media used to shore up the rule of its laws, logics, and narratives—our way of life.

Biomedicine and the “untimeliness” of death Within the subtle bio-discourses advanced by neoliberal biopolitics, the time of “life itself” is a managed, mandated, and moralizing story—a linear-sequential time dictating the boundary of not-being and illness. The diagnosis of Makayla’s illness, her prognosis, and the perceived statistical proximity of her death, highlights the contours of this particularized time. Indeed, her refusal to accept the numerical borders of livingness offered by chemotherapy, the abstract statistical promise of belatedness, a continued and determined trajectory of living, animates the call for biomedical intervention precisely because the presence of her illness in the time of her life is understood as arriving too soon: her illness, but worse, the present possibility of her death, demands to be recognized as untimely within the scope of a particular narrative of life. The rhetorical posturing of the “untimely” can be understood as concurrent with the ahistorical staging of modernity—the un-timely—that in turn informs the linear-progress narrative of biomedicalization and biotechnology toward its fervent campaign on history, truth, and death. But the untimely is more “present” as a determination of a life lived in particular codes of biomedical time. Here, moments of “the untimely” are punctuated by those medical circumstances deemed premature, too spontaneous, a complication

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of the present rather than a determination of possibility for the future, outside of the determined arc of biomedical suitability, probability, or statistical predictability. An ethics of care, we wish to suggest, manifests against, or despite, the biopolitical paradigm that reflects this temporization of “life itself” defined according to the statistical analysis of populations, risk surveillance, and the like, opening instead toward the otherness of timeframes or life-times outside this framing. In a letter to Makayla published in the Globe and Mail from Heather Cleland (2014), a Toronto-based writer, Cleland recounts her own experience as a young woman battling with cancer. Cleland affirms the virtues of chemotherapy and the other drugs required to manage its symptoms, despite their negative effects on her body or the discomfort of then-present experience, but instead as a proposition of hindsight—a determination made from the future about her past self and now to Makayla herself. Without chemotherapy, writes Cleland, “I wouldn’t have finished school. I wouldn’t have spent nine whole months travelling around the world. I wouldn’t have gotten my master’s degree . . . Chemotherapy was the only reason I was able to do all those things” (Cleland 2014). Without chemotherapy, Cleland suggests, Makayla will not live to go to university, to travel, to pursue relationships, and to live a full life, as Cleland imagines it. We are to recognize that Makayla’s death will be an untimely one: a young woman robbed of life “too soon,” whose childish fears of bodily discomfort and, disturbingly, whose cultural identity are keeping her from the future that Cleland writes from, here held out as a possible, even probable, redemptive, time “to come”—uttered with all the messianism that so often accompanies the salvific promises of biomedicine and its speech acts. The biomedical determination of life’s futures, the will to “make live,” is the condition of the untimeliness of death’s proximity in the present, and a component of how long one should live, statistically, how and when illness should manifest in the living body (ideally, never), and how biomedicine and sometimes law should intervene into that proximity. But how can we know for certain the contours of the untimely in its proximity to the case of Makayla Sault, and how the design of this temporal aspect of biopolitical “life” represents itself on the frontiers of an ontological struggle for meaning, when the specter of the residential school, of the so-called “1960’s scoop,” of the decaying and forgotten infrastructure of the reserve, directly faces the power actively sketching the meaning of “life itself”? What sort of imaginable future announces itself from these ruins? In the mainstream media frenzy that followed Makayla’s refusal, most of it studiously silent on these colonial histories, we can read a string of binaries that spring from these temporizing constitutions and that lend flesh to the meaning of our biopolitical lives: primitive/modern, faith/knowledge, religion/science, value/fact. Binaries such as these suggest a natural progression toward a life lived within (and without) certain frames, until certain times, under supervised conditions, and managed by entrepreneurial subjects who “freely” employ a cadre of service providers and experts, medical and otherwise, for their own betterment, vitality, self-actualization. Thus, one’s life-time is encoded in a broader story of progress against the “violence” of death to the human bios, written into the linearprocessual narrative of biomedicine and employed as a framing of life itself inside

The time of a life 101 the litany of seductive tropes that characterize neoliberal biopolitics. These form the privileged narratives of progress that delimit the possibilities for narratives otherwise, those ways of knowing and interacting with the world that are incompatible with the proliferating and performative regimes of evidence-based practice, randomized controlled trials, techno-scientific advancements, and disease and risk surveillance. What it means to live, to regard the time of one’s life, outside of these frames becomes not only an untenable but an unthinkable proposition, indeed, insufferable, intolerable, even cruel.

Conclusion: toward an elegiac time of life And yet, this unthinkability becomes the time of one’s life in the all too real proximity of death, where the linearity of time itself becomes insufferable, intolerable, cruel: When Mary found that her cancer had spread (had, indeed, been spreading), her health status retroactively shifted. I am alive. No, you are . . . In one swift motion, the cancer prognosis detonates time, which scatters like so many glass shards. (Jain 2013, 28) This is the subjective temporality of cancer, of detonated and scattered time: past tense, past perfect, present, and future enter into catachresis. While the cancer prognosis detonates the time of one’s life, the treatment imposes its own time, consoling us, perhaps, with the seemingly objective temporality of statistics, the biomedical time of cancer, a series of moments in waiting rooms and on gurneys, painful tests and biopsies, X-rays and CT scans, pathology reports, the scheduled stings of the infusion needle, regimes of medication, hospital parking lots, management of food and drink intake, the anxious days and weeks of waiting for test results, chemo “daycare” clinics, wig fittings, visits from timid well-wishers, etc., held together by the promise to defer the certainty of mortality, and the ways these each and all affect the experience of other times and places, retrospectively and prospectively. The purported certainty of statistical time—the predictive rationality of neoliberalism, statistical biomedicine, and anatomopathology—does not and cannot map onto the time of a life. “I am alive. No, you are . . .” Alive, yes, living, a statement of fact that is countered at once: No, you are . . . Not quite dead, not yet, but dying, surely, whatever that might mean. But the prognosis radicalizes this death-in-life, bringing death into intimate proximity such that the distinction between life and death, operating so commonly as binary terms—and imbricated, too, with the binaries above—opens instead onto what Jain calls “living in prognosis,” or prognostic time. Here is a time catered to the future, the possibility, necessity, of being unto, of continuing elsewhere in time, and by virtue of the ordered imagination of one trajectory of livingness. But so too does this time fetishize a magnitude of the past, demanding the reality of untimeliness by crashing the time of a life offered

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as obvious and deserved, earned by biotechnological mastery and also disfigured by it. “No, you are . . .” Not supposed to die, yet . . . An unfocused barrier between the adverbial and the conjunctive forms appears in this disintegrated temporization of prognosis, where the “yet . . .” operates as both the deferral of the present into the future and its negative horizon, manifest from the statistical prediction of being in a future, what lies, or does not lie, just around the numbers, and what it means in the present and for the past. A narrative of life not only interrupted but deceived, and within which the prognosis promises a series of renewed deceptions for the time of one’s life, one’s future, one’s death. We may also perceive in this constrictive biomedical time, metaphorically, but maybe also literally, a colonial time: of the colonizers and their order, the time of the Metropole, of the processual and hegemonic regime of the clock and the schedule and the assembly line, the time of law and the self-authorizing power of its rule over subjects, the seemingly timeless mechanisms and developments of modernity, deceptive yet seductive, and the averted cultural and social channels of lives lived otherwise. In this, the body of a young girl is colonized in all senses, not just by cancer but by the consumptive impositions of biomedicine, religion, history, law, labor, social services, living within the onto-logics of their timeframes, and their suggested, demanded, order of and over her life. The battle for Makayla’s body is the battle to continuously define life inside of the complex network of temporalities of governance as the “when” of a life, and the “who” that is allowed to die to help these definitions flourish in time. Risking the charge of naïveté, or worse, a neoprimitivist or romanticized characterization of Aboriginal peoples, we have sought in Makayla’s story to honor the time of her life as a refusal of the colonizing forces of biopolitical neoliberal time. We have tried not to essentialize her identity or to judge how her decision is voiced but to problematize the myriad responses to this refusal and to begin to set them into wider social, historical, and political contexts. Within such a presentation, Makayla’s story serves as the occasion for a claim about the manner in which neoliberal biopolitics and the medico-legal and juridical complex seize upon and mobilize a particular form of “life itself.” We adapt Jain’s notion of an “elegiac politics” vis-à-vis cancer to propose an elegiac time as the time of one’s life—a time that would refuse the temporizations of biomedicine, and open instead onto, or perhaps more tellingly, from, the time of a life lived and spoken in the intimate proximity of death. Traditionally, elegies are melancholic laments for the dead, but they intrude into life, are sung or spoken by the living, and acknowledge that our living work of mourning, our grief, is not done. They signal the continued presence, the lives, of those we have loved and lost, who we harbor deep within us, unwilling or unable to let go (see Freud 1957, 237–58). This continued presence is in part political because it honors the dead in the lives of the living, and affirms their importance for the polis, the community. Speaking of an elegiac politics of cancer, Jain (2007, 89) writes: An elegiac politics argues for pushing the private face of cancer cultures— grief, anger, death, and loss into the public cultures of cancer—perhaps even

The time of a life 103 if only alongside of LiveStrong, or sipping, driving, and walking for the cure— with the recognition of the enormous economic profits and gains that parallel these losses. In this respect, this chapter hopes to perform an elegiac politics, and to imagine how this might be brought into the present, as a life lived, despite the counterfactual futures of neoliberal biomedicine. It asks us to hold together, for a moment, claims that are ultimately indeterminable and times that are temporally ambiguous, where the categories of public and private enter into catachresis, and myriad intersecting and conflicting claims are brought to light. Where the elegy denotes the solemn but oftentimes equally joyful work of loss and mourning and remembering, it does so by holding onto the ambivalence of death-in-life, and narrating the time of a life, singing it, speaking it, celebrating it. As Jain (2013, 223) puts it more recently in terms that are disarmingly folksy yet insightful, “Cancer is both okay—it has to be okay, because ultimately, for people who are dying, death has to be okay—and not okay.” Of course, under the regime of neoliberal biomedicine, death is not “okay,” nor is it “okay” to refuse potentially life-saving treatment. “It is not okay,” Jain writes, that our languages are deceitful, that people with cancer are blamed or shamed or promised that they will survive or asked to disguise themselves . . . An elegiac politics . . . helps make this contradiction (okay, but not okay) not only legible, but livable and dieable. (2013, 223) Jain seeks to “retrieve the individual” from his or her obliteration into statistics and datasets and probabilities—“from the aggregated thinking that contemporary cancer knowledge forces us into” (2013, 223)—to live a life elegiacally, we might say, livable and dieable both for those patients who are compliant, but also for those “bad” patients (see Steinberg 2017, this volume), individuals like Makayla, who the regime renders unrecognizable, ultimately responsible, and in the final moments, perhaps, unable to be grieved, mourned, elegized. Our gesture here, most emphatically, is not to return to (neo)liberal conceptions of the autonomous or consensual subject—the sovereign reign of the individual, nor is it to locate an ethics in such medico-legal subjectivation. Rather, it suggests an elegiac ethics in the fraught, ongoing narration of a life lived, in the often disharmonious relationality of elegiac voices, and to recognize that this is a song sung, as it were, by the living and the dead. It is here, then, that (neo)liberal conceptions of “sovereignty” clash with claims to popular sovereignty, where a claim might emerge from and on behalf of a people—the temporality of which exceeds the individual life—to give voice to others, which might well include our ancestors, founding fathers or mothers. The temporal value of an elegiac life is ambivalent. Ethically, it lacks the clarity of focus that statistical prognosis purports to offer, and approaches hegemonic temporalities on a day-to-day basis, in the act of loving and being loved, in the

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experiential, intersubjective moments of living, in dreams and visions, within and across a community or communities of reception, within and across clock-time. The time of a life approaches these figures of technological time, colonial time, biomedical time and tries to make sense of itself despite and in the face of them, interceding, often failing, and yet celebrating the contours not offered by the fixed relationality of bios management, the determined future of the statistic, the story already told in numbers and charts and needles and yet unread and unfelt in the body of one afflicted by an illness. “[T]ime in elegy wraps itself around the subjective life and death of each of us who passes through the timeless grammar and promise of cure, compensation, and the captured youth of a photograph” (Jain 2007, 90). That is, the time of an elegiac life unfolds in an expansive array of lived moments, open to the relationality of other ways of living life, of approaching and seeing death in oneself and others, of understanding and disclosing, and in doing so encounters fixity with another kind of seeing to the abstract codes of vitality, health, life, death, the present, and the future. Death is recollected in life as possibility, a confirming proximity not simply denied or refused its purchase, but instead granted as a contour of an open and relational narrative of life lived with and alongside others, living and dead. Is it possible that Makayla’s refusal begins to give voice to ineffable terms for the time of a life, and points to the fractures in conceptualization for life defined and written within our neoliberal biopolitical frames? Indeed, Makayla’s story begs the question of a life lived, understood, and pursued otherwise, a narrative of history that must lead into an indeterminate future, where the path of a life is not defined by the aggressive silencing of death, nor the orderly and scheduled time of being. What would an ethics of care look or sound like if it spoke in the presence of an elegiac time of life? It is at best reductive for an ethics of care to imagine and to treat life within the scope of biomedical, colonial, neoliberal, and technological time alone—a life that does not act in other times, experience other times, or know them, but trades relentlessly in counterfactuals. Rather, ethical care must wrestle with the ineffable grammar of the time of a life, to try to elegize the times of living asserted by and woven into the relationality of community, the shared declaration and affirmation of times to live, to die, to know them otherwise, and as one’s own to tell and be told.

Postscript On January 19, 2015, Makayla Sault, at home in her bed, suffered a fatal stroke. In the time that followed the decision by the Brant CAS to bestow capacity upon Makayla to refuse continued chemotherapy treatments in May 2014, the attacks and accusations against her and her community, the appeals for her life, shifted to a similar case of another 11-year-old First Nations girl—only referred to as J.J. due to a publication ban—with lymphoblastic leukemia who also decided to refuse treatment. J.J., from Grand River First Nation, nearby to the New Credit First Nation, was also being treated at the McMaster Children’s Hospital. As in Makayla’s case, the hospital contacted the Brant Family and Children’s Services

The time of a life 105 (BFCS), which services Grand River Reserve, following J.J.’s refusal to continue treatment in August 2014. And, as in Makayla’s case, BFCS found that J.J. was not a child in need of protection. The McMaster Children’s Hospital then took the extra step in the wake of that decision to bring the BFCS to court, hoping to force them to remove J.J. from her family and to impose the chemotherapy treatments that would save her life—at least, within the abstract futurity and almostcertainty of the ninetieth percentile. In a November 2014 decision, Justice Gethin Edward of the Ontario Court of the Justice, in a landmark ruling, not only found that J.J. would not be removed from her family, but that the “decision to pursue traditional medicine” is her “aboriginal right . . . a right [that] cannot be qualified as a right only if it is proven to work by employing the Western medical paradigm.”4 The implications of this ruling, and the story that it attends, far exceed the borders of this postscript. What, then, might we hope to say here—with, or through, Makayla’s death? Certainly, Makayla’s story—her decision, her life, her death— are in constant proximity to Justice Edward’s ruling, J.J.’s decision, and in the continued backlash from popular media, commentators, and many physicians. When the news broke that Makayla had died, many such commentators responded by suggesting that her death “needn’t have happened” (Mehta 2015), that she “should not have” (Wiens 2015) or did not have to die. And while these, and other, proclamations about her life in the popular media are certainly related to the socalled untimeliness of her death, Makayla’s death is also illegible, unnecessary, because it was preventable. We might ask: What makes a death preventable? What constitutes a life lived in the service of the prevention of death? And if Makayla’s death had instead occurred despite chemotherapy treatments, would her life have been lived in the time of a life that prevents death? Such a life, we might say, in the bio-discourses of neoliberal biopolitics, is imagined, recognized, to always already exist in a world where death is displaced—disavowed somewhere among the preventable, the percentage point, the outlook. Posthumously, these biomedical discourses still attempt to prevent Makayla’s death by presenting her life, statistically—imagining a preventative living for Indigenous children in the shadow of a misguided court decision, the life-time in the care of praevenire, the before-to-come. Biomedical treatment, then, always prevents her death (even when it cannot) by preventing the presence of death in discourse, in life, in care. It is therefore not surprising that news of Makayla’s death has been used to shore up the Truth of biomedical care and its narratives of progress against J.J., Justice Edward’s decision in November 2014, and Indigenous rights gone “off the rails.” Makayla was “allowed” to die, so say numerous commentators in the popular media, and “we” granted this allowance by not fighting hard enough against families, peoples, who, in Kelly McParland’s words (2014), will not step “temporarily outside their traditional heritage.” The outside of this heritage is, naturally, the future: the future of medicine, the “progress” of care, the imagined healthy life of the body of the cancer patient saved by chemotherapy treatments. The burden, the “disgrace,” that this allowance casts on those who would prevent Makayla’s death, retrospectively, to make her

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live even in death, constitutes the necessary evidence for refusing the right of those communities and peoples who, prospectively, will not properly take up the responsibility of life. Juliet Guichon (see Blackwell 2015), in conversation with the National Post, argued that this case suggests “a different standard” of care for Aboriginal and non-Aboriginal children. On the one hand, a dead child who “could have lived,” and another 11-year-old Indigenous girl with the same fate; on the other hand, citizens, Canadians, to recall the appeal Guichon and her colleagues made for Makayla’s life in May 2014, who are safe along the path tread by the progress of medical science and care. “The trail [Makayla] blazed,” wrote Guichon, was, rather, only “to her own death” (Guichon et al. 2014). Of course, death here is again imagined simply as Makayla’s inability to live by the terms recognized and imposed by biomedical care, her incapacity as an individual to make the “right” choice. In Guichon’s terms, it seems, the refusal to consent to biomedical treatment is simply the long march to primordial and savage history, the oblivion of the past and death. Such a trail has been blazed by others, forgotten others, left behind and propped up as examples in the biopolitical imaginary. The future here has already been decided, and in Guichon’s terms, Makayla’s march was backwards, not forwards, into death. Understood as such, Makayla’s death is invisible, reduced to the future she was never allowed to live, to the disavowed past, and serving only to reify the truth that J.J. will die an untimely, yes, but also timeless death if she, and others, continue on that path. A complicated temporality again converges on Makayla’s body, where the waspreventable of her death (and by implication, J.J.’s life) meets the time of her life. While bio-discourses make Makayla live, over and over, by engaging in the theater of her imagined future, performing her life because her death is untranslatable, J.J.’s decision to live otherwise continues to challenge these moralizing narratives. As we have argued, Makayla’s story, among other things, potentially offers us the means with which to wrestle with the indeterminacy of the future, the relationality of community, of illness, health, the proximity of death, and the grammar of lived moments that constitute the time of a life. While the discourses of neoliberal biopolitics can do no more than to make Makayla live in spite of death, her community, and other communities, might remember and share how the time of her life affirmed a different kind of time to live and to die: “I think she will be remembered partly as a trailbrazer,” said Chief Bryan LaForme of New Credit First Nation (cited in Mehta 2015). “She set the course for a court action that worked in the favour of First Nations across the country” (cited in Mehta 2015). In this, perhaps we can ask whether or not it is possible that Makayla’s story tells of the care that other, indeterminable, ways of living and dying open up toward a future, and speak against the silencing of death-in-life for and with others, living and dead.

Notes 1

In the 2009 Supreme Court of Canada case, A.C. v. Manitoba (Director of Child and Family Services), the Court ordered that a 15-year-old Jehovah’s Witness be forced to undergo lifesaving blood transfusions against her will. For children under 16 years of

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age, there is a judgment of “maturity”; the greater the significance of the decision, the more the state has a right to intervene in this judgment. See A.C. v. Manitoba 2009 SCC 30. Dawn Martin-Hill, chair of Indigenous Studies at McMaster University, offered an ominous warning of such potential, urging against provoking the “wrath” of the “warrior societies” intent on guarding Makayla from forced treatment and removal. See Pecoskie (2014). Although Guichon and her colleagues do not mention it by name, they refer to the Supreme Court case cited in Note 1 above. See Kelly Grant (2014).

References A.C. v. Manitoba (Director of Child and Family Services), 2009 SCC 30. 2009. Accessed July 20, 2014. http://scc-csc.lexum.com/scc-csc/scc-csc/en/item/7795/index.do. Blackwell, Tom. 2015. “Makayla Sault Likely Died from Rebounding Cancer, Not Chemotherapy Effects: Specialist.” The National Post, January 20. Accessed August 20, 2015. http://news.nationalpost.com/news/canada/makayla-sault-likely-died-fromrebounding-cancer-not-chemotherapy-effects-specialist. Canadian Cancer Society. 2014. First Nations Healing. Accessed July 14, 2014. www. cancer.ca/en/cancer-information/diagnosis-and-treatment/complementary-therapies/firstnations-healing/?region=on#ixzz37ZutEQZ3. Cleland, Heather. 2014. “Dear Makayla: I Endured Chemo. Trust Me, It’s Worth It.” The Globe and Mail, May 22. Accessed June 20, 2014. www.theglobeandmail.com/globedebate/dear-makayla-i-endured-chemo-trust-me-its-worth-it/article18791085/. Foucault, Michel. 2003a. The Essential Foucault. Edited by Paul Rabinow and Nikolas Rose. New York: The New Press. ——. 2003b. “Society Must Be Defended”: Lectures at the Collège de France, 1975–1976. Edited by Mauro Bertani and Alessandro Fontana. Translated by David Macey. New York: Picador. Freud, Sigmund. 1957. “Mourning and Melancholia.” In The Standard Edition of the Complete Psychological Works of Sigmund Freud, Volume 14, edited and translated by James Strachey, 237–58. London: Hogarth Press. Garlow, Nahnda. 2014. “New Credit Child Resists Forced Chemotherapy Treatment.” Two-Row Times, May 7. Accessed July 13, 2014. www.tworowtimes.com/news/local/ new-credit-child-resists-forced-chemotherapy-treatment/. Government of Canada. 1996. Health Care Consent Act. Accessed July 14, 2014. www. e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm#BK4. Grant, Kelly. 2014. “Ontario Hospital Cannot Force Chemo on 11-Year Old Native Girl, Court Rules.” The Globe and Mail, November 14. Accessed August 20, 2015. www.theglobeandmail.com/life/health-and-fitness/health/cancer-patient-has-right-to-useaboriginal-healing-instead-of-chemo-judge-rules/article21587859/. Guichon, Juliet, Ian Mitchell, Roxanne Goldade, and Victor Lew. 2014. “Makayla Too Young to Make Medical Decision.” The Hamilton Spectator, May 31. Accessed August 1, 2014. www.thespec.com/opinion-story/4550627-makayla-too-young-to-makemedical-decision/. Jain, S. Lochlann. 2007. “Living in Prognosis: Toward an Elegiac Politics.” Representations 98(1): 77–92. ——. 2013. Malignant: How Cancer Becomes Us. Berkeley, CA: University of California Press.

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McParland, Kelly. 2014. “Aboriginal Culture Can’t Be Allowed to Trump J.J.’s Chance to Live.” The National Post, November 17. Accessed August 20, 2015. http://news. nationalpost.com/full-comment/kelly-mcparland-aboriginal-culture-cant-be-allowedto-trump-j-j-s-chance-to-live. Mehta, Diana. 2015. “Makayla Sault, Aboriginal Girl Who Refused Chemotherapy, Dies.” The Canadian Press, January 20. Accessed August 20, 2015. www.weyburnreview.com/ family-blames-chemo-for-death-of-aboriginal-girl-11-who-abandoned-chemo-1.1736337. “Ojibwe Child Refuses Chemo, Wants Traditional Medicine Instead.” Video, May 13. Accessed July 13, 2014. www.youtube.com/watch?v=NrF5wWQ4hIU. Pecoskie, Teri. 2014. “Forcing Chemo on Girl will Incite ‘Wrath’: Expert.” The Hamilton Spectator, May 17. Accessed July 20, 2014. www.thespec.com/news-story/4526844forcing-chemo-on-girl-will-incite-wrath-expert/. Rilke, Rainer Maria. 2009. The Notebooks of Malte Laurids Brigge. Translated by Michael Hulse. London: Penguin Books. Steinberg, Deborah Lynn. 2017. “Good Patient—Bad Patient: The Ethical Imaginary of Cancer.” In The Ethics of Care: Moral Knowledge, Communication, and the Art of Caregiving, edited by Alan Blum and Stuart J. Murray, 149–77. Oxford and New York: Routledge. United Nations. 2008. Declaration on the Rights of Indigenous Peoples. Accessed July 20, 2014. www.un.org/esa/socdev/unpfii/documents/DRIPS_en.pdf. Wiens, Evan. 2015. “Makayla Sault Should Not Have Died.” Winnipeg Free Press, January 22. Accessed August 20, 2015. www.winnipegfreepress.com/opinion/analysis/makaylasault-should-not-have-died-289405981.html.

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University–community collaboration with urban Aboriginal peoples Case study of the Healing of the Seven Generations Canoe Project Ginette Lafrenière

Introduction The purpose of this chapter is to illustrate through a case study how public intellectuals can play a role in contributing to community development in urban settings, particularly with vulnerable populations. The Canoe Project is an example of how members of a research group, in tandem with members of an Aboriginalspecific collective, collaborated on a project that over a summer brought together men, women, elders, and young people to build a canoe and in the process reclaim a sense of self. The development of the Canoe Project has its roots in the work that I have engaged with several members of the Aboriginal community in KitchenerWaterloo since 2003. Through my collaboration with the founding director of a community-based healing project for survivors and intergenerational survivors of the Residential School System I have had the opportunity to work on a variety of timely projects and initiatives. The Healing of the Seven Generations is a nonprofit organization that seeks to heal, enrich, and enhance the lives and living conditions of survivors and intergenerational survivors of the Residential School System. Initiated in 2003 and funded by a one-time grant of $400,000 by the Aboriginal Healing Foundation, the Healing of the Seven Generations (H7G) is a community-based healing project that honors community building and outreach with Aboriginal and non-Aboriginal social service providers in order to enhance the lives of its clients. The H7G project has evolved over time and has expanded its healing focus toward youth and restorative justice as well as other stakeholders within the Aboriginal community. My work with the H7G is sporadic in that we collaborate when there is a need to do so. The Executive Director and I have attended several conferences together to describe our work and collaboration. She has guest lectured in several of my

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classes over the years and as such has significantly enhanced learning opportunities for my students. In the past 6 years, our collaboration has been less pronounced as the H7G has achieved a level of financial stability and independence. Nonetheless, to this day, I am still called upon occasionally to review certain funding applications and conduct other services as a public intellectual. I am most happy to do so as it is an honor and a privilege for me, as an ally, to collaborate with members of the Aboriginal community. My involvement is, at times, admittedly timid as I am painfully aware of my social location as a white intellectual who is regarded as an “ambassador” of the university. My presence may be perceived and experienced as suspicious and perhaps even intrusive and irrelevant to some stakeholders within the Aboriginal community. Add to this reality, the complex tensions and politics that may exist within and among various Aboriginal circles, and my raison d’être within any community development initiative is curious to say the least. I think that this is a common sentiment that many allies may experience when working with members of First Nations communities and I believe it is healthy to reflect upon the positionalities and tensions we negotiate as public intellectuals, particularly in the context of UCC. In light of this sentiment, this chapter aims to illustrate that despite the complexities and challenges of working across cultural and academic boundaries, public intellectuals can play important roles in creating spaces for urban community development with community partners who may be characterized as vulnerable or marginalized. In the 12 years that I have worked at Wilfrid Laurier University, I have worked with sex-trade workers, survivors of war and torture, survivors of intimate partner violence, and survivors of the Residential School System. And over the years, my students and I have worked with hundreds of individuals, as well as the health and social service agencies that work on their behalf, within projects that have been dedicated to transformative practices. In other words, we have worked closely with community partners on community-based research projects as well as community development projects that are dedicated to enhancing the lives of the people we purport to serve as social workers. This particular chapter seeks to shed light on how exactly a UCC project can emerge, unfold, and come to fruition. The nuances, textures, strengths, and challenges of this particular case study are inherently important to those academics who seek to understand the merits and legitimacy of UCC.

Defining university–community collaboration (UCC) Before describing the case study, it is important to highlight a few salient ideas relative to what actually characterizes UCC. It has been argued that establishing “university” and “community” as mutually exclusive categories establishes and reinforces silos, emphasizing divisions and minimizing similarities (Dempsey 2010). However, the question of what or who constitutes “university” and “community” in UCC is an important starting point for understanding the nature of UCC and the diversity of manifestations of UCC given the way in which “university” and “community” can be and have been defined in UCC literature.

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The literature on UCC frequently describes the common goal of collaboration as tackling a large, complex social or environmental ill that cannot be effectively addressed by one individual or one organization or group alone (Boyer 1990; Gronski and Pigg 2000; Spoth and Greenberg 2005; Swan 2002). However, collaboration need not always aim to meet such lofty goals as solving large intractable problems. In practice, as evidenced by the numerous accounts of UCC partnerships, the goals of any single UCC initiative may be focused on more immediate or practical problems faced by communities or community-based agencies for which university expertise and resources may be applied to support solutions, including the development of new knowledge. Realistically, university– community partnerships are “experiments that can lead to learning” about potential ways to solve problems and about the ways partnerships work (Baum 2000). Specific goals for a collaborative should be set and some realistic goals can be achieved, but broad visions of dramatic social change through UCC are, in fact, overblown or misguided (Baum 2000; Clayton et al. 2010). Certainly UCC has been shown to have positive impacts, but the evidence that collaboration between universities and communities is effective for ameliorating large-scale and complex social ills has yet to be firmly established (Nichols et al. 2013). Because I am a social work educator, I believe that as a public intellectual my work and research should be transformative. That is, that the critique that I hold of static, unimaginative, and oppressive ways in which social workers—and the systems in which they work with vulnerable populations—operate need to be dismantled and transformed into spaces that are truly responsive to client needs. As such, a transformative approach to UCC involves using social justice principles to solve inequities rather than engaging in acts that are primarily charitable. While many of the projects in which my students and I have worked certainly incorporate some conventional practices associated with UCC, such as community-based research and community service learning, they are more focused on taking action and supporting the community in ways that go beyond knowledge production and transfer—the traditional contribution of the university to UCC initiatives. The Canoe Building Project is an excellent example of the messy reality of UCC as a transformative tool of social change, albeit on a very small scale. The body of literature concerned with UCC spans a range of academic disciplines and is mostly characterized by case studies. One of the primary challenges of defining UCC is the confusion that can reasonably result from the number of different terms used to describe it and its related concepts, as well as the general inconsistency of terminology usage and definition across authors, projects, practitioners, etc. Some of the terms used in the literature to describe UCC include campus-community collaboration (Nichols et al. 2013), campus–community partnerships (Dempsey 2010; Worrall 2007), civic engagement (Clayton et al. 2010; Costa and Leong 2012; Stanton 2012), community collaboration (Jensen, Hoagwood, and Trickett 1999), community–academic partnerships (Fielden et al. 2007), community-engaged scholars (Ward 2010), community–campus partnerships (Furco 2010), and community–university collaborations (Buckeridge et al. 2002; Dewar and Isaac 1998; Suarez-Balcazar, Harper, and Lewis 2005).

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For the purposes of this chapter, and frankly, with most of the work in which I am involved, I happily reside within the nomenclature of “university–community collaboration” as it is expansive enough to include the tensions and complexities that define it. As we will see in the Canoe Building Project, the role that my students and I played in assisting the H7G in acquiring funding for the project, while important, was not by any stretch of the imagination life altering. In this particular case study, the role of the “university” was rather limited in that, after the acquisition of funds, the rest of the project rested almost entirely within the hands of the community partner. What is important in this particular case study is that, I, as a representative of the academy, stepped out of the traditional box in which most academics are seen and placed in, namely, as “educator” and “researcher,” and walked a line of “community developer” and “ally” for an organization that required our services in a punctual and purposeful manner. What I will discuss further on in this chapter is that the role of the public intellectual in a UCC context is complex and requires enormous flexibility and tolerance for ambiguity. These are attributes that, in my opinion, can define “university–community collaboration,” hence my affection for the term. Certainly, for some academics, spending time on a canoe building project is the antithesis of intellectual work and rigor, and yet, I will argue that it is precisely because of the work in acquiring the funds for the project that the canoe building initiative emerged as a profoundly meaningful and intellectual endeavour. Within this reality, the concept of UCC, although not generally described as such, can be viewed as perhaps being too expansive and inclusive, therefore translating into a sort of curious, intellectual nothingness. For me, au contraire, I believe that the strength of UCC lies precisely in its inherent complexities, hence why I choose to embrace the concept and words.

Aboriginal realities in Kitchener, Ontario The Canoe Building Project was situated in a growing urban center. The city of Kitchener has a population of over 200,000 and is located in Southwestern Ontario, Canada. In 2011, 1.5 percent (3,155) of the population of Kitchener had an Aboriginal identity (Statistics, Canada, 2013). Statistics Canada defines the term “Aboriginal identity” as whether the person reported being an Aboriginal person, that is, First Nations (North American Indian), Métis or Inuk (Inuit) and/or being a Registered or Treaty Indian, (that is, registered under the Indian Act of Canada) and/or being a member of a First Nation or Indian band. Aboriginal peoples of Canada are defined in the Constitution Act, 1982, section 35 (2) as including the Indian, Inuit and Métis peoples of Canada. The scope of Canadian urban populations are continually adapting and evolving. These changes are due to the shifting nature of urban populations, a larger reflection of federal and provincial policies regarding settlement, employment, and immigration (Newhouse and Peters 2003). In the case of Aboriginal people, there has been a dramatic increase in the proportion of Aboriginal people living in Canadian urban centers (Cooke, Woodhall, & McWhirter, 2013). According to 2011 Census data, off-reserve Aboriginal people constitute the fastest growing segment

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of Canadian society. In 2011, 56 percent of Aboriginal people lived in urban areas, up from 49 percent in 1996 (Statistics Canada, 2014). In many Canadian urban centers, Aboriginal people represent a substantive portion of the population and, if this trend progresses, their presence in urban centers will continue to grow. As Evelyn Peters (2004) and Newhouse and Peters (2003) emphasize, any discussion of urban Aboriginal demographics, or health or social trends, must take into account the historical conditions that created these urbanization patterns. Many Canadian cities grew in places that were historically used by Aboriginal people as settlements or gathering places. As Peters (2004) explains, many government policies were aimed at concentrating Aboriginal people away from urban centres. These historical realities demonstrate that patterns of urbanization for Aboriginal people are not like other migrants to cities in Canada. Although Aboriginal people may encounter some similar challenges and opportunities, many Aboriginal people are travelling within their traditional territories. As Peters (2004, 3) writes, [m]any [Aboriginal people] have expectations that their Aboriginal rights and identities will make a difference to the ways that they structure and live their lives in urban areas. The clarification of Aboriginal rights in urban areas, represents a major challenge for governments, both Aboriginal and non-Aboriginal. Factors influencing the increased urban migration by Aboriginal people include economic, social, and historical issues. Other key themes identified in the literature include: a lack of opportunities for education and employment in reserve or rural communities; the need to improve overall living conditions and socioeconomic status; the need for specialist health services; the lack of access to adequate housing in some rural and reserve communities; an expectation of opportunity and in some cases excitement in city life (Levesque 2003). Newhouse and Peters (2003) argue otherwise: many Aboriginal people are working to build culture and community in urban areas, and urbanization is occurring along with reinforcement of cultural identities. Unfortunately there is little research on the reasons why Aboriginal people migrate to the city of Kitchener. Anecdotally, there are many individuals and families who come to southwestern Ontario looking for employment, educational opportunities, and so on. What was evident at the time of the Canoe Building Project was the fact that there were various Aboriginal stakeholders residing in Kitchener who were interested in becoming involved in the project as a way to reconnect with each other as colleagues, friends, and volunteers. What follows is how the Canoe Project unfolded.1

The Canoe Building Project Approximately 7 years ago, I received a phone call from the Executive Director of the H7G requesting my assistance in applying for a United Way Grant to access monies to build a canoe. Admittedly, this was the first time in my career that I had been asked to apply for monies for this type of project. Needless to say it took quite a bit of discussion with the United Way in terms of explaining the cultural

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and social relevance of spending money on building a canoe. The way in which we framed the project was within the parameters of an intergenerational project: the vision of the E.D. of the H7G was, among other things, to encourage young urban Aboriginals to collaborate socially with adults and elders and create a space whereby the building of the canoe would bring young people to think about the rich and textured past of First Nations people. The act of building something tangible, a canoe, which would carry many stories of collaboration throughout the summer, among a wide array of First Nations peoples was particularly appealing to the H7G. It took months of negotiations for a $2,000 grant. But, to the credit of the United Way, they took a chance and supported this curious project. Because the H7G does not have charitable status, my research group received the monies and then disbursed them to the elders who were commissioned to build the canoe with members of the Aboriginal community. A Mennonite farmer donated the land and wood from which the canoe was built, and over a period of almost 3 months the canoe was built by dozens of community members. Various Aboriginal members from a multitude of different cultural groups came together to work on the project. Regardless if someone was Ojibwa, Dene, Mohawk, or Cree, man or woman, child or adolescent, everyone contributed across culture, gender, age, etc., in order to make the canoe come to life. What was most impressive about the project is how the various members came together and shared stories of their respective communities, cultures, and pasts. The Healing of the Seven Generations created an opportunity for survivors and intergenerational survivors to work together and, through building the canoe, to rebuild their own narratives in ways that were healing, authentic, and contributive to positive community development. In essence, the H7G fulfilled its mandate as a healing project through the building of the canoe. And, my students and I, in a very small way, contributed to the unfolding of this project. The fact that we were successful in the grant application that we submitted on behalf of the H7G was meaningful to us. And this, despite the fact that some individuals at the university would have thought curious all of the efforts made to apply for the grant, which was neither research nor evaluation. But to me, to my team, it was so much more. It was an opportunity to be allies in a profoundly meaningful way and contribute to a summer of extraordinary exchanges. UCC in this case was quite simple: apply for funding to build a canoe and the community partner would take care of the rest. Sometimes that is all that is needed or required of public intellectuals within a context of UCC: to avail our expertise, skills, and students in ways that can be helpful to our partners. Interestingly, and retrospectively, I believe that the canoe is actually a metaphor for some very powerful learning. For example, through the lenses that we bring to our work as academics, there are multiple ways in which the canoe project can be framed. Over the years, as I have presented this case study in a variety of venues, many people have understood or experienced this case study as a sort of classroom. That is, the Canoe Building Project is a powerful symbol for learning. It is a primary prevention project, an Aboriginal intergenerational project, an intercultural project, a capacity building project, an artistic project, a therapeutic and healing project. It is a project that can take on multiple dimensions depending on how one wishes

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to understand it. Surely these different meanings are a foundation for future rigorous and rich academic inquiry. This particular case study has come to life after years of reflecting upon it and presenting it at various conferences, classes, and other spaces. The last time I spoke of this case study was at a conference sponsored by the Canadian Association of Research Administrators (CAURA) in November 2014. The feedback I received from that presentation and subsequent invitation to present again in Toronto at another conference was the impetus for me to highlight through this chapter the merits and challenges of UCC. I believe wholeheartedly that UCC can create spaces for community development as evidenced by this case study. While there is more work to do relative to being able to more profoundly theorize on the legitimacy of this partnership, for the purposes of this chapter, I believe it is legitimate to at least surrender the idea that public intellectuals have a role to play in building authentic and mutually satisfying relationships with community partners. We all learn when working in such a fashion. For example, my research assistant who was a placement student at the time was instrumental in engaging the United Way in a series of discussions that led to the grant being approved. The student in question learned a lot about advocacy, grant writing, and presenting a case to a potential funder. These are qualities that surely are most helpful for someone graduating from a Master’s program in Social Work. My own learning came from within, that is, that I needed to concentrate on what I felt was important and not allow myself to be swayed or feel diminished by individuals who did not see how the canoe project was academic in any way, shape, or form. My belief in the project made me stronger and made me believe in myself in a way that was affirming. It also allowed me to theorize on how my reflections on UCC are informed by my practice as a community organizer. I have shared on multiple occasions that public intellectuals need not always interact with community partners solely on a research basis. As evidenced by the canoe project, an academic can engage in a UCC framework that has very little to do with research. My “theorizing” has brought me to a place that merits closer scrutiny: if a public intellectual works within a community development framework, research will follow. As described earlier in the literature review on UCC, much of academics’ time is spent in the opposite direction. That is, academics will rally around a research idea and then engage with community partners to complete said research. My strategy is different: I think, and as evidenced by this case study, academics can respond to a community need that has very little to do with research, and then, once that need has been fulfilled, research opportunities can abound. Theoretically, I can spend the next few years writing a dozen articles on the Canoe Project through a variety of lenses. Had I not accepted to write the grant for the project in the first place, future writing and theorizing might not have been possible for me as an academic.

Lessons learned Once the canoe was built, members of the community brought it to the Grand River to test its buoyancy. Success. It was a wonderful example of a canoe built

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by those individuals whose ancestors had done it a thousand times in different ways before. The pride of ownership and accomplishment was very strong. Ultimately, no one can really “own” a canoe in such a context, and as such, in a ceremony organized between the Healing of the Seven Generations and the City of Kitchener, the canoe was donated to the City as an artistic piece that is now prominently displayed on the second floor of the City Hall of Kitchener. It is now a site for tourists who come to visit Kitchener. The lessons we all learned from this project are numerous. From a social justice perspective, the project was one that honored my belief that the work in which we are involved as social workers and social work educators should be transformative. From a student perspective, successfully working on a grant and engaging dialogue with a funder is an important lesson to carry as a working professional in social services. Taking risks and engaging in work that may appear curious on the surface (getting involved in a canoe project) only speaks to the nature and depth of university–community collaboration. Having the ability and the opportunity to work across cultural boundaries with First Nations people is an enormous honor; to have contributed in a small but punctual way to the Canoe Building Project speaks to the legitimacy of alliance building between Aboriginal and non-Aboriginal allies. The fact that the project was able to create a physical space for community members to meet and interact cannot be underscored: the teachings from elders to the Aboriginal youth and the sharing of food and stories are all elements of a successful community development project. Presumably, and this would need to be verified, members of the Aboriginal community enjoyed the experience of working on the project and experienced a certain degree of satisfaction in not only working collaboratively, but having the opportunity to work as a collective, sharing stories and experiences all the while connecting in a meaningful way with each other and to the project at hand. As for the partnership between the H7G leadership and my team, the merits and benefits of working in tandem with an academic partner was experienced as most positive. This isn’t always the case, but for the Canoe Building Project, it was an alliance that was experienced as mutually beneficial. Can a framework of university–community collaboration create opportunities for community development for urban Aboriginals? As evidenced by the Canoe Building Project it is possible. This case study should serve as an illustration of what is possible when public intellectuals embrace a UCC framework in their careers and don’t shy away from stepping outside of the academy’s traditional expectations. As mentioned above, this particular case study highlights certain elements of positive UCC: purposeful engagement with social justice principles, enhanced student learning, approaching UCC through a community development framework as opposed to one that is research-focused, working effectively across cultural boundaries as allies, contributing to enhanced community capacity building among urban Aboriginals, as well as nurturing a mutually beneficial working partnership between the academy and a community-based healing project. There is still much to learn in terms of how public intellectuals can effectively collaborate with community partners: the canoe building case study is an attempt to encourage dialogue and debate relative to the merits of doing so.

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Note 1

The literature review on Aboriginal urban demographics was utilized for an environmental scan on Aboriginal Health and Wellness in Waterloo Region, which a colleague and I conducted last year. The results of the project were never published. Pieces of the literature review have, however, been applied to this chapter given its relevance to the Canoe Building Project.

References Baum, H.S. 2000. “Fantasies and Realities in University–Community Partnerships.” Journal of Planning Education and Research 20: 234–46. Boyer, E.L. 1990. Scholarship Reconsidered: Priorities of the Professoriate. Princeton, NJ: The Carnegie Foundation for the Advancement of Teaching. Buckeridge, D.L., R. Mason, A. Robertson, J. Frank, R. Glazier, L. Purdon, C.G. Amrhein, N. Chaudhuri, E. Fuller-Thomson, P. Gozdyra, D. Hulchanski, B. Moldofsky, M. Thompson, and R. Wright. 2002. “Making Health Data Maps: A Case Study of a Community/University Research Collaboration.” Social Science & Medicine 55: 1189–206. Clayton, P.H., R.G. Bringle, B. Senor, J. Hug, and M. Morrison. 2010. “Differentiating and Assessing Relationships in Service-Learning and Civic Engagement: Exploitative, Transactional, or Transformational.” Michigan Journal of Community Service Learning 16(2): 5–22. Cooke, M., Woodhall, J., and McWhirter, J. 2013. The Social and Health Service Needs of Aboriginal Peoples in Smaller Urban Centers in Southern Ontario: A Synthesis Paper for Service Agencies. Population Change and Lifecourse Strategic Knowledge Cluster Discussion Paper Series/Un Réseau stratégique de connaissances Changements de population et parcours de vie Document de travail 1(1): 1–28. Costa, L. M. and Leong, K. J. 2012. “Introduction Critical Community Engagement: Feminist Pedagogy Meets Civic Engagement.” Feminist Teacher 22(3): 171–80. Dempsey, S.E. 2010. “Critiquing Community Engagement.” Management Communication Quarterly 24: 359–90. Dewar, M.E. and C.B. Issac. 1998. “Learning from Difference: The Potentially Transforming Experience of Community–University Collaboration.” Journal of Planning Education and Research 17: 334–47. Fielden, S.J., M.L. Rusch, M.T. Masinda, J. Sands, J. Franklin, and B. Evoy. 2007. “Key Considerations for Logic Model Development in Research Partnerships: A Canadian Case Study.” Evaluation and Program Planning 30: 115–24. Furco, A. 2010. “The Engaged Campus: Toward a Comprehensive Approach to Public Engagement.” British Journal of Educational Studies 58(4): 375–90. Gronski, R. and K. Pigg. 2000. “University and Community Collaboration: Experiential Learning in Human Services.” American Behavioral Scientist 43(5): 781–92. Jensen, P.S., K. Hoagwood, and E.J. Trickett. 1999. “Ivory Towers or Earthen Trenches? Community Collaborations to Foster Real-World Research.” Adult Developmental Science 3(4): 206–12. Levesque, C. 2003. “The Presence of Aboriginal Peoples in Quebec’s Cities: Multiple Movements, Diverse Issues.” In Not Strangers in These Parts: Urban Aboriginal Peoples, edited by D. Newhouse and E. Peters, 23–34. Ottawa: Policy Research Initiative. Newhouse, D. and E. Peters, Eds. 2003. Not Strangers in these Parts: Urban Aboriginal Peoples. Ottawa: Policy Research Initiative.

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Nichols, N., D.J. Phipps, J. Provençal, and A. Hewitt. 2013. “Knowledge Mobilization, Collaboration and Social Innovation: Leveraging Investments in Higher Education.” Canadian Journal of Nonprofit and Social Economy Research 4(1): 25–42. Peters, E.J. 2003. “Geographies of Urban Aboriginal People in Canada: Implications for Urban Self-Government.” In State of the Federation, edited by M. Murphy, 39–76. Kingston: Institute of Intergovernmental Relations, Queen’s University. ——. 2004. “Three Myths about Aboriginals in Cities: Breakfast on the Hill.” Paper presented at the Canadian Federation for the Humanities and Social Sciences. N/A. Accessed June 6, 2008. www.fedcan.ca/english/pdf/fromold/breakfast-peters0304.pdf. Spoth, R.L. and M.T. Greenberg. 2005. “Toward a Comprehensive Strategy for Effective Practitioner-Scientist Partnerships and Larger-Scale Community Health and Well-Being.” American Journal of Community Psychology 35: 107–26. Stanton, T.K. 2012. “New Times Demand New Scholarship II: Research Universities and Civic Engagement: Opportunities and Challenges.” Journal of Higher Education Outreach and Engagement 16(4): 271–303. Statistics Canada. (2013). Population by Aboriginal identity, Kitchener Catalogue number: 99-010-X2011005 (table). NHS Focus on Geography Series. Retrieved from www12. statcan.gc.ca/nhs-enm/2011/as-sa/fogs-spg/Pages/FOG.cfm?lang=E&level=4&GeoCode= 3530013, accessed 16 April 2016. Statistics Canada. (2014). Urban Aboriginal Peoples. Retrieved from www.aadncaandc.gc.ca/eng/1100100014265/1369225120949, accessed 16 April, 2016. Suarez-Balcazar, Y., G.W. Harper, and R. Lewis. 2005. “An Interactive and Contextual Model of Community-University Collaborations for Research and Action.” Health Education & Behavior 32(1): 84–101. Swan, S. 2002. “Rhetoric, Service, and Social Justice.” Written Communication 19(1): 76–108. Ward, E. 2010. Women’s Ways of Engagement: An Exploration of Gender, the Scholarship of Engagement and Institutional Reward Policy and Practice. Doctoral Dissertation. Boston, MA: University of Massachusetts. Worrall, L. 2007. “Asking the Community: A Case Study of Community Partner Perspectives.” Michigan Journal of Community Service Learning 14(1): 5–17.

6

Postcolonial negotiations Care, Aboriginal rights, and the challenge of democracy David Lynes

Care and human rights Michael Ignatieff, in his book The Rights Revolution (2000, 43) writes: “The purpose of human rights is not to make those in danger the wards of conscience of those in zones of safety, but to protect, defend, and restore the agency of the defenseless so they can defend themselves.” This quote relies on a number of assumptions that raise difficult questions about both the nature of human rights as well as their relative distribution in a highly diversified democratic society. In the process, it also implicates human rights within the wider conversation of the nature of care and responsibility. The very idea of the need for human rights presupposes both a population endangered by such an absence as well as those in a position to respond to and remediate this danger. As such, the commitment to human rights serves as a window on the complicated conversations surrounding questions about both the origins and the limits of care as an orientation between both people and cultures. By introducing into this conversation the responsibility to “protect, defend, and restore” the human rights of others, Ignatieff is not necessarily excluding the sense of this obligation as something that could or should exist equally and mutually between all people. What it does suggest, however, is that the responsibility to care for others emerges out of particular interactional histories that serve to ground the call for care, the particular form it takes, as well as some idea of what it hopes to achieve in terms of the welfare of all concerned, including both those who are the recipients of care and those who undertake its provision. Examining Ignatieff’s discussion of the defense of the human rights of Canada’s Aboriginal population helps to illustrate how the history of a country’s origins participates in effectively circumscribing one of its ostensively most magnanimous impulses with respect to the care and responsibility for the rights of its minority populations.

Wards of conscience One of the most striking features of Ignatieff’s quote above is its reference to “zones of safety.” Despite the “human” and so putatively universal nature of such

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rights, for some, it seems, they remain “safe,” while for others they do not. As a consequence, the argument goes, human rights need to be safeguarded in order to continue to exist and the ability to do so, according to Ignatieff, involves “agency.” But how does it follow that those secure in the knowledge of their own rights are thereby either obliged or qualified to defend, restore, or care for the rights of others? Ignatieff ’s use of the phrase “wards of conscience” suggests one possible explanation for the compulsion, but as will be shown, not necessarily the qualification to undertake such a defense. Within the context of Canada’s colonial history can be found a very reasonable explanation for a troubled conscience on the part of those whose rights are assumed to be and are treated as safely ensconced, when confronted with the absence of similar rights among so many others, so very close at hand. As most accounts of the “discovery” of North America now make clear, the assertion of the rights of colonizing Europeans was and continues to be clearly at the expense of the preexisting and well-established indigenous population (see for example Dickason and Newbigging 2010; Wright 1993). Ignatieff’s statement, then, suggests that as a response to this history, those confident in the safety of their own rights may have good reason to feel obliged to defend or restore the rights of those without. Assuming, that is, that the colonizers do, in fact, recognize and accept their own role in the creation of inequality and injustice with respect to the Aboriginal population, and with this recognition, an inherited sense of responsibility to work toward the extension of equality and justice for all. So while Ignatieff specifically recommends against people becoming wards of conscience, we can see where the temptation might arise. If aboriginal people are not to be considered wards of conscience, though, Ignatieff nevertheless preserves a sense of responsibility on the part of those with rights, toward those without them or for whom they are threatened. Interestingly, then, the first thing to notice about the responsibility Ignatieff admits to, is that it is not a matter of conscience. But if not, what kind of matter is it and why is it important that the conscience of those whose rights have been institutionally safeguarded in this way be absolved or at least bracketed away from inclusion in the challenges he is addressing? One way of responding to these questions is through examining how Ignatieff’s proposed response to the problem directs attention away from questions of conscience. To begin with, Ignatieff’s stress on the centrality of “agency” introduces a serious and unfortunate obfuscation. Insofar as agency is understood as the ability to formulate and act upon the pursuit of one’s own destiny, the exercise of agency is inevitably conditioned and influenced by the social, cultural, and political context within which people live. If some people, therefore, are unable to realize their destiny, or worse, have difficulty conceiving of what it might look like within a particular political circumstance, this absence is not due to any deficiency or short-coming on the part of those so categorized. The problem with politically oppressive regimes is not that those who live within them lack either the drive or the interest in realizing their own promise or the promise of their communities. It is rather that their ability to do so is so seriously intruded upon by forces over

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which they have very little control. If, therefore, a particular political regime, whether it be autocratic or democratic, deprives a segment of the population of their human rights, looking to rehabilitate the agency of rights-deprived people would not seem to be the most obvious solution because it is not the most obvious source of the problem. In fact, there is little to choose between what Ignatieff refers to as “agency” in this context and the existence of the very human rights it (agency) is being called upon to defend. In terms of the interest in care, this has definite implications. If it is not the agency of the rights-deprived people that is at issue—if, in other words, the absence of their rights cannot be accounted for through the identification of any lacuna in terms of individual (or communal) characteristics of those whose rights are to be cared for and protected—the foundation as well as the legitimacy of Ignatieff’s caring attention is thrown into question. Insofar as the incentive toward care is conceived of as grounded in the sense that those in a position to offer it are in possession of something the recipients of it lack, Ignatieff’s discussion to this point does not get us much closer to understanding what this might be. One of the reasons, it would seem, is because what is in need of care in this instance differs from the care we might imagine being provided to one recovering from physical or psychological trauma. If there remains, nevertheless, some responsibility to be assigned for either the infringement or outright denial of the rights of others (the possible traumatic effects of this denial not withstanding), how is this to be understood if its origin is not adequately explained by any innate deficiency in a people’s agency or in the possibility of guilt over Canada’s colonial history? If, as suggested above, the political and legal edifice of the society is intimately connected to the achievement of human rights, it is not surprising to find one explanation for the persistent sense of responsibility with respect to this problem to be embedded within the workings of a modern liberal democracy such as Canada’s.

Democracy’s promise Developing this line of thought with the help of a somewhat more substantial consideration of the political origins of a collective’s responsibility toward safeguarding the rights of all, is Ronald Dworkin’s landmark book, Taking Rights Seriously (1978). According to Dworkin, one explanation for the emergence of rights as a topic of concern can be linked directly to an inevitable disproportion of power in the hands of the majority, which is essentially built into the democratic system itself. Dworkin writes: The bulk of the law—that part which defines and implements social, economic, and foreign policy—cannot be neutral. It must state, in its greatest part, the majority’s view of the common good. The institution of rights is therefore crucial, because it represents the majority’s promise to the minorities that their dignity and equality will be respected (1978, 204)

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This quote goes a long way toward explaining how it is that an institutionalized injustice within a democratic society can be addressed with a clear conscience. In these terms, the guilt Ignatieff is warning against could be understood as a response to the recognition that the majority’s promise to its minorities has been broken or betrayed. Dworkin, however, gives us a way to understand how such guilt may not be entirely warranted. While there could certainly be grounds for regret or even guilt over the enactment of individual laws that were and are particularly damaging to the dignity and respect of certain minorities, a share at least of the responsibility for this, according to Dworkin, can be found in the democratically inherent disequilibrium of power. Accordingly, the perpetuation of any on-going injustices toward a particular minority can be thought of as a form of collateral damage, which is part and parcel of an ostensibly blameless commitment to democracy. The problem is, however, that if it is true that the bulk of democratic law “cannot be neutral” and must represent “the majority’s view of the common good,” it may also be true that the dignity and equality of a minority’s view of the common good may never feel adequately represented or respected under this law and may, in fact, not be. As long as this is the case, questions of culpability (if not of conscience) can be glossed over but can never be completely eradicated. This remains the case, even when the quest to defend or restore a minority’s human rights is explained and defended as a worthy end in itself, rather than just as a means to assuage guilt over its absence. As Dworkin’s observations make clear, even as this effort may certainly be a worthy end in itself, the absence or loss of a minority’s rights within a democracy is never an accident or an act of God. As such, its origins cannot be ignored if it is not to be allowed to continue indefinitely. When Dworkin says, then, to repeat: “The institution of rights is therefore crucial, because it represents the majority’s promise to the minorities that their dignity and equality will be respected” (1978, 204), what is not being said is that the dignity and equality of all will be respected. It does not say this because the dignity and equality of the majority is, evidently, so safely assumed as to be taken for granted. In fact, the institution of rights only becomes interesting or worthy of concern for the majority when it periodically becomes obvious that whatever form respect for the dignity and equality of the majority takes, it at least potentially, if not inevitably, imperils the dignity and equality of a minority. Furthermore, the majority’s promise to the minority, no matter how heart-felt and sincere, does nothing to alter this equation. In light of this, we should not be surprised to find that any conception of the majority’s responsibility toward and attempts to care for and respond to those who do not share its understanding of the common good, will have difficulty sustaining its legitimacy (let alone its sincerity) against the weight of this democratic disposition. What we are left with, then, is the question of the nature of a more universal responsibility, one that falls on everyone, to assert and defend the rights and equality of all. This is different, however, than asking what the responsibility of a democratic majority is toward the minority. And yet it is this later question that Ignatieff, no less than Dworkin, must treat as paramount in light of their

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commitment to democracy, and it is the question that Ignatieff is primarily concerned with answering. However, the overwhelmingly oppressive legacy of Canada’s colonial history, especially with respect to its consequences for First Nations, Inuit, and Métis people, introduces a rather more pressing antecedent question. Namely, how well can the idea of a democratic majority’s responsibility toward the dignity and equality of its minorities hope to be realized when the majority’s pursuit of its own well-being has involved what some refer to as a genocidal attack on the culture of aboriginal minorities?1 More specifically, to what extent does the majority’s recognition of its own complicity in an historical denial of the rights of others qualify it for the task of insuring equal rights for all in the future? For the famous Brazilian educator, Paulo Freire, the answer to this question is, not at all. In fact, Freire insists those responsible for such injustice must specifically be excluded from the effort to remedy it. As he writes in his book, The Pedagogy of the Oppressed (1970, 39), “the pedagogy of the oppressed cannot be developed or practiced by the oppressors. It would be a contradiction in terms if the oppressors not only defended but implemented a liberating education.” In the case of the relationship between Canada’s First Nations and the Canadian government, this presents an extremely difficult problem. Despite the role of the Canadian government in the historical oppression of Canada’s indigenous peoples and cultures, few would argue that this same government has no role at all to play in either ending the systemic cultural oppression of Aboriginal peoples or, for that matter, actively supporting the ongoing process of cultural affirmation and renewal. As Ignatieff points out, the Report of the Royal Commission on Aboriginal Peoples (Government of Canada 1996) itself argues that the best way forward in this regard is through a “treaty-making process,” a process that “recognizes the existing treaty obligations of both parties, and . . . also acknowledges that both parties come to the table as equal nations” (Ignatieff 2000, 80). And yet, notwithstanding the attraction of this ideal of negotiated settlements, and despite some limited success in this direction in the Canadian context, it remains a stubbornly elusive goal. And while the reasons for this persistent difficulty continue to be explored, very few question the wisdom of relying on treaty or rights negotiations as the most auspicious way forward toward a just future coexistence. One consequence of the faith in a negotiated settlement between such longstanding and entrenched differences is that the question of the potential wisdom of Freire’s contrarian view is very easily overlooked, if not altogether dismissed. If we return once more to Ignatieff’s discussion, it is not difficult to see how this happens. What is instructive is how steadfastly the logic of Freire’s conclusion is avoided right at the point where its relevance becomes most clearly apparent.

The problem of good faith Contrasting the commitment of Aboriginal groups to “an ideal of sharing use rights (of land, resources, etc.) with others, rather than a European model of exclusive ownership” (Ignatieff 2000, 80), Ignatieff continues:

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David Lynes The problem is how to create the good faith to share between peoples who have such a long history of hurt and injury between them, and in particular, how to adjudicate disputes when sharing fails (2000, 80)

Undermining the possibility of establishing such good faith is dealing with what Ignatieff refers to as “exceedingly difficult problems of principal” (2000, 80): For a Canadian government even to enter into negotiations with Aboriginal nations about sharing sovereignty is to concede that the sovereignty they are discussing is a patchwork quilt of overlapping jurisdictions . . . For aboriginals, discussions about sharing sovereignty require accepting the legitimacy of a government that presided over their despoliation as a people (2000, 80) In other words, it is as difficult for the Canadian government to recognize and accept that its own sovereignty can or should be limited by the sovereignty of Aboriginal Nations, as it is for Aboriginal people to accept either the legitimacy or the sincerity of a government whose policies have only very recently shown any interest in anything but the systemic erasure of Aboriginal culture. If “good-faith” negotiations depend upon negotiators from both sides trusting that there is a mutual commitment to arrive at a just settlement of their differences, on a deeper level, it also follows that each side understands that the other has a “right” to lay claim to their different objectives within the wider context of the society both hope to live peacefully within. It is the absence of the mutual acknowledgement of this right that constitutes the “exceedingly difficult problems of principal” Ignatieff is referring to.2 It is essentially the same problem that is implicated in the question of care and helps to reveal just how complex and fraught any provision of care can be. If those identified as in need of care by care providers should reject what is being offered, one reason could well be based on the rejection of the inference of inferiority. If the acceptance of care or aid depends upon the recognition of the superiority of those in a position to offer it, as in the early stages of a Hegelian dual for recognition between the master and slave,3 the rejection of the offer could be read as a rejection of the imposition of at best an incidental and at worse a spuriously imposed structure of power. In order to deal with this problem it first needs to be recognized. However, it is unfortunately this same problem with respect to the provision and protection of human rights that Ignatieff’s ideas for arriving at a settlement of these deep-seated differences consistently glosses over. A further look at some of Ignatieff’s more concrete suggestions reveals how this happens. In order to deal with the differences between the rights secured by the Canadian majority and those sought by most all First Nations communities, along with many aboriginal communities across the county, Ignatieff repeatedly emphasizes the need for mutual sharing:

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Either we must share power, land, resources, and sovereignty among the nations of this country, or we will founder in civil strife. But the sharing has to go both ways. The majority’s recognition of aboriginal peoples must be followed by aboriginal recognition of the legitimacy of our equal claim to the land . . . What is required is a process that builds a mutual and equal recognition, each side publicly acknowledging the other’s right to govern and live in peace. (2000, 84) What Ignatieff says shortly after this, however, is key to understanding why this does not happen and why it is unlikely to happen anytime soon. In line with Dworkin’s comments about a democratic majority’s partisanship and strength, Ignatieff continues: At the moment, might lies with the majority and right with the minority. Mutual recognition must rebalance the relationship, with both power and legitimacy finding a new equilibrium. Then, and only then, will we be able to live together in peace in two countries at once, a community of rights-bearing equals and a community of self-governing nations. (2000, 84) As promising as this sounds, setting our sights on the goal of establishing a new equilibrium between power and legitimacy effectively ignores a much more fundamental problem related to the way power sets the terms for what qualifies as legitimate and true. As Foucault (1980, 93) so effectively emphasizes: “We are subjected to the production of truth through power and we cannot exercise power except through the production of truth”. In other words, power asserts its own legitimacy as it is exercised, simultaneously establishing and insisting upon its right to act as it does and not otherwise, notwithstanding the objections of those without power. Furthermore, as the work of Noam Chomsky so convincingly illustrates, the “truth” and “legitimacy” thereby achieved asserts itself as effectively on those who share power as it is designed to do upon those who are subjected to it.4 Evidence of this is clear enough from Ignatieff’s own discussion. If, as Ignatieff says: “The majority’s recognition of aboriginal peoples must be followed by aboriginal recognition of the legitimacy of our equal claim to the land” (2000, 84), the problem is that the very act of claiming North American land by the first European settlers was an act of “might”—an exercise that presumed and depended upon the military power of the colonizers staking their claims against the objections of those already inhabiting the land. It is not then, as Ignatieff suggests, that the majority has difficulty recognizing aboriginal people. Aboriginal people were and are recognized as a threat to the legitimacy of the European claims, a threat that was (and continues to be) dealt with not by moral suasion, but by the exercise of political power afforded by democracy, including, when necessary, by armed force.5

126 David Lynes It is this, then, that explains Ignatieff’s presumption that aboriginal people must accept the legitimacy of “our equal claim to the land” is perfectly reasonable, fair, and “true” to the idea of justice. As long as the original claim to the land by European settlers was and continues to be a claim backed by “might” rather than “right,” any call for the acceptance of an “equal claim to the land” is also a call to embrace an idea of equality forged on the basis of an historically unequal relationship. To call for negotiations based on “equal claims to the land” then, and to expect that this call will be heard as a sincere effort to achieve justice for all concerned, is also to expect that the history of inequality, which led to the need for such negotiations in the first place, will either be forgotten, forgiven, or treated as no longer relevant. This is not to accuse Ignatieff of insincerity. The point is that his expectation of good faith speaks to the level of success the original exercise of might, going right back to the earliest colonizers, has achieved in setting the terms for what will be considered fair, legitimate, and just thereafter. The expectation that a de jure equality of rights and freedom can and does exist between groups of people whose differences depend upon historically oppressive inequalities so well ensconced as to be practically taken for granted, is certainly not new. In his discussion of labor-power in an early section of Capital (1987, 172) Karl Marx describes, with characteristic irony, “a very Eden of the innate rights of man,” which appears to exist at the point where the industrialist purchases the only commodity the worker has to sell, namely labor-power. Within this realm, as Marx writes: There alone rule Freedom, Equality, Property, and Bentham. Freedom, because both buyer and seller of a commodity, say of labour-power, are constrained only by their own free will . . . Equality, because each enters into relation with the other, as with a simple owner of commodities, and they exchange equivalent for equivalent. Property, because each disposes only of what is his own. And Bentham, because each looks only to himself. (1987, 172) However, as Marx continues: On leaving this sphere of simple circulation or of exchange of commodities, which furnishes the “Free-trader Vulgaris” with his views and ideas, and with the standard by which he judges a society based on capital and wages, we think we can perceive a change in the physiognomy of our dramatis personae. He, who before was the money-owner, now strides in front as capitalist; the possessor of labour-power follows as his labourer. The one with an air of importance, smirking, intent on business; the other, timid and holding back, like one who is bringing his own hide to market and has nothing to expect but—a hiding. (1987, 172)

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The grounds for the worker’s trepidation here are laid not necessarily by any obvious mendaciousness on the part of the industrialist, nor by any lack of initiative on the part of the laborer. The relative advantage of one group over the other is built into the very structure of the economic system and continues to prevail no matter how generous a particular capitalist employer or how enterprising an individual worker. In fact, the very idea of a worker’s agency is strictly circumscribed by the established “legitimacy” of his/her relationship with the employer, and more generally, by this way of conducting business. It is not difficult to see the similarity with how a democracy, built on the foundations of a colonial heritage, operates. Just as the corporate CEO has a responsibility to protect and increase the investments of shareholders, the democratic leader is responsible for the institution and defense of, in Dworkin’s phrase, “the majority’s view of the common good.” And just as the corporation’s interest in its workers cannot interfere with its pecuniary mandate, the democratic leadership’s responsibility toward its minorities must similarly be checked by the mandate of the majority’s understanding of the common weal. Insofar as this understanding includes ideas of legitimacy, truth, justice, and equality, and against the background of an appreciation of power’s ability to establish the parameters of these ideas, Freire’s injunction against the oppressors’ participation in the defense and implementation of the “liberating education” of the oppressed begins to sound much more cogent. The negotiations called for, then, by Ignatieff and many other academic and non-academic commentators and by many First Nations, Inuit, and Métis peoples themselves, are not and cannot be between “equals.” The historically oppressive processes that have created the minority status of Canada’s indigenous peoples have also created limits to just how helpful those entrusted with the defense of the majority’s views can be in the pursuit of concepts and practices of justice and equality that genuinely embody these principles. It also unfortunately but inevitably circumscribes the majority’s attempts at provisions of care directed toward the physical or psychological consequences of past government policies now recognized and admitted to as culturally pernicious and regrettable. The paternal overtones of such provisions are as difficult to ignore or deny as the majority’s right to govern within a democratic regime.

The search for an indigenous philosophy Against the background of the discussion so far, it is possible to see how even more nuanced examinations of the dilemma facing Canadian Aboriginal peoples, and in particular their relations with the Canadian state, encounter similar difficulties. A good example is Dale Turner’s book, This is not a Peace Pipe: Towards a Critical Indigenous Philosophy (2006). Turner recognizes, for example, that “the meaning and content of Aboriginal rights is expressed in the legal and political discourses of the Canadian state, and that therefore Aboriginal rights exist or have legitimacy only within the Canadian state” (2006, 4). He also recognizes

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that by “legal and political discourses of the Canadian state” is meant “the discourses of rights, sovereignty, and nationalism that are used to legitimize Canadian legal and political practices and institutions” (2006, 4). For Turner, however, a recognition of this situation does not diminish his optimistic view of the potential for on-going Aboriginal/State negotiations. The following extended quote helps to explain both the basis of this optimism as well as the inherent limits of Turner’s project—a limit, interestingly, of which it appears Turner himself is not altogether unaware: The purpose of this book is not to provide another theory or philosophical framework of Aboriginal rights. Instead, I will argue that whatever this theory looks like, if it is to be workable in Canadian society, it has to evolve out of the dialogue between Canadian and Aboriginal peoples. In addition, I will reflect on what it means for Aboriginal peoples to participate in this very specialized kind of dialogue and defend the following claim: If Aboriginal peoples want to assert that they possess different world views, and that these differences ought to matter in the political relationship between Aboriginal peoples and the Canadian state, they will have to engage the Canadian state’s legal and political discourse in more effective ways. (2006, 5, emphasis in original) As Turner says here, he is not attempting to provide a theory or philosophical framework for Aboriginal rights insofar as he understands the evolution of either to be the outcome of a dialogue between “Canadian and Aboriginal people.” The problem, however, is that theory and philosophy do not stand idly by in wait for the versions of either that Turner anticipates evolving. What is missing here is an acknowledgement that the framework of unequal power that underlies any commitment to dialogue is already theoretically and philosophically hard at work. In fact, it is impossible to imagine the rationale for a dialogue in the first place without this being the case—without, for example, some theoretical idea of justice that such a dialogue imagines itself committed to and working toward. The belief that any such dialogue could be key to providing a new, legitimate, and just conception of Aboriginal rights, then, can only be sustained against the background of an ongoing effort to critically examine the ways in which the colonial (and postcolonial) “might” of the majority continues to underwrite what will qualify as a “fair” and “just” resolution of disagreements in essential and consequential ways. In the absence of this, even if the different Aboriginal worldviews Turner refers to are eventually acknowledged in ways that “matter,” the extent of their potential influence will be necessarily limited and largely predetermined by the democratic prerogatives and priorities of the state’s majority.6 By the end of his book, however, Turner more explicitly recognizes that: [indigenous intellectuals] can invoke terms like kinship, spirituality, and “Original Instructions” all we want, but they will do little political work for

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us as long as the discourses of rights, sovereignty, and nationhood remain inextricably embedded in the philosophical, ideological, religious, social, and economic realities of the dominant colonial culture. (2006, 116) What Turner refers to as the “political work,” then, of rights, sovereignty, and nationhood can only proceed with the aid of “A critical indigenous philosophy [that] is meant to engage European philosophy while at the same time unpacking the meaning and praxis of colonialism in the history of ideas” (2006, 116, emphasis in original). In other words, what indigenous philosophy is conceived as being in possession of, is a critical capacity that European philosophy lacks, capable of “unpacking the meaning and praxis of colonialism.” There remains, however, a problem here, one that continues to exist on a level just below the surface of Turner’s proscriptive summation. This problem is directly related to, as Turner points out, the observation that “the discourses of rights, sovereignty, and nationhood” continue to be “inextricably embedded in the philosophical, ideological, religious, social, and economic realities of the dominant colonial culture” (2006, 116). One of the upshots of our earlier discussion is that given the very idea of what would constitute a just, fair, and moral resolution of questions of rights, sovereignty, and nationhood continues to be asserted both through what Turner refers to as the “praxis of colonialism” and what Dworkin calls “the majority’s view of the common good.” In light of this, it is difficult to ensure that “unpacking the meaning and praxis of colonialism in the history of ideas” (Turner 2006, 116, emphasis added) can happen unscathed by the very history this activity itself is inextricably bound up with and is part of. What Turner recognizes, then, is that if “indigenous philosophy” does in fact possess a critical capacity “European philosophy” lacks, the formulation and articulation of such a philosophy will not necessarily engage what Turner calls the “political work” of creating—or recreating—a just and equitable form of collective coexistence. That is unless, he says, it includes unpacking the meaning and praxis of colonialism. The problem remains, however, that we all, aboriginal and non-aboriginal people alike, constitute the on-going legacy of colonialism within the Canadian context. Insofar as the praxis of this legacy continues to influence the way we understand the very meaning of fairness and justice, it is as difficult to imagine a political formation embodying these ideals and free from this influence as it is to imagine the existence of Canada without its colonial origins or its commitment to its democratic political organization.

Polite political conversation John Dunn (2005, 41) writes in his history of democracy: To reject democracy today may just be to write yourself out of politics. It is definitely to write yourself more or less at once out of polite political conversation.

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While it is unlikely that those who are familiar with and write about the challenges facing Canada’s indigenous people would worry about their standing in polite political conversation, to write oneself “out of politics” altogether could be seen as a much more serious drawback. As long as on-going negotiations with federal and provincial governing officials continues to be considered the most promising avenue toward the achievement of aboriginal sovereignty, justice, and equality, being out of politics would not seem to be feasible. However, if the alternative is to write into or within the parameters for “truth,” “justice,” and “equality” so effectively established by the oppressive history of Canadian/Aboriginal relations, there must be a third option. If, as has been suggested here, that deeply tendentious parameters for justice and equality spring as much from the imperatives of democracy as from the praxis of colonialism, then the challenging of persistent colonial assumptions and practices alone can only move us so far toward less fettered conceptions of these ideas, as well as the consequences of their apparent achievement. Enveloped within and legitimated by democratically defined conceptions of the common good, as well as for whatever form initiatives of care for this ideal might take, if the historically conditioned distortions of justice and equality have proven to be persistently resistant to the influence of specifically aboriginal worldviews, this could be because these different views (the ones Turner would have “matter” politically) are aimed principally at the continuing oppressive vestiges of colonial assumptions and practices. As essential as such views are to the on-going battle against continuing colonial influences, they could be less well-suited to the work of deconstructing the limitations democracy itself imposes on the ideas of equality and justice that aboriginal people continue seek and deserve. At the end of Turner’s book he writes: “The problem of authenticity, of who can speak for whom in an indigenous intellectual culture, is no doubt a thorny one—but it is our problem to discuss and solve!” (2006, 117). Without denying the vexatiousness of this question, the persistent obstacles presented by the democratic implementation of the ideas of equality, justice, and rights as well as by the innumerable efforts to care about and take responsibility for the consequences of their recently acknowledged absences, are problems all social theorists can and do share equally. To the extent that efforts to address this problem can only hope to be undertaken in genuinely creative and original ways if unconstrained by the dictates of either polite political conversation or democratically defined politics itself, it is an effort that cannot help but throw into question the priority of negotiations with various levels of governments that are necessarily political and must be minimally polite in order to proceed at all.

Notes 1 2

See Ward Churchill in this regard. Particularly the essay entitled “Bringing the Law Home” from his book Indians Are Us: Culture and Genocide in Native North America (1994, 11–63). If, as Ignatieff says, “The process of working out how to share sovereignty is diabolically complicated, protracted and expensive” (2000, 82), one reasonable

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explanation is that it is these “problems of principle,” rather than (or in addition to) numerous more pragmatic problems, that stand in the way. Also referred to as “Lord” and “Bondsman” in Hegel’s Phenomenology of Spirit (1977, 111–19). As Chomsky points out in his book Necessary Illusions (1989, 19): [A]s the intellectuals pursue their grim and demanding vocation, they readily adopt beliefs that serve institutional needs; those who do not will have to seek employment elsewhere. The chairman of the board may sincerely believe that his every waking moment is dedicated to serving human needs. Were he to act on these delusions instead of pursuing profit and market share, he would no longer be chairman of the board.

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Examples of the government’s willingness to exercise its military “might” in the face of aboriginal resistance against oppressive political decisions are, unfortunately, not limited to the years of Canada’s founding. One of the best known of the more contemporary examples is referred to as the “Oka Crisis.” In the summer of 1990 a road blockade was set up by members of the Mohawk community of Kanehsatake to protest a plan by the town of Oka, Quebec to build a golf course on sacred burial grounds. This prompted the Quebec government to invoke a section of the National Defence Act, which authorized the use of a federal regiment (replete with tanks and military helicopters) to contain and suppress the dissent (see Swain 2010 and the documentary film by Obomsawin 1993). To be clear, the democratic priorities referred to here are not necessarily the priorities articulated by a particular duly elected political party. No matter who is governing, it is the warrant laid down by the responsibility to what Dworkin refers to as “the majority’s view of the common good” that effectively establishes the bottom line for the influence of any other point of view, regardless of how well it may be understood, appreciated, and respected.

References Chomsky, Noam. 1989. Necessary Illusions. Boston, MA: South End Press. Churchill, Ward. 1994. “Bringing the Law Home.” In Indians Are Us? Culture and Genocide in Native North America, 11–63. Toronto: Between the Lines. Dickason, Olive Patricia with William Newbigging. 2010. A Concise History of Canada’s First Nations. Toronto: Oxford University Press. Dunn, John. 2005. Democracy: A History. Toronto: Penguin. Dworkin, Ronald. 1978. Taking Rights Seriously. Cambridge, MA: Harvard University Press. Foucault, Michel. 1980. Power/Knowledge: Selected Interviews and Other Writings 1972–1977. Edited by Colin Gordon. New York: Pantheon Books. Freire, Paulo. 1970. The Pedagogy of the Oppressed. Translated by Myra Bergman Ramos. New York: Continuum. Government of Canada. 1996. Report of the Royal Commission of Aboriginal Peoples. Ottawa: Government of Canada. Hegel, G.W.F. Phenomenology of Spirit. 1977. Translated by A.V. Miller. New York: Oxford University Press. Ignatieff, Michael. 2000. The Rights Revolution. Toronto: Anansi. Obomsawin, Alanis. 1993. Kanehsatake: 270 Years of Resistance. Documentary. Directed by Alanis Obomsawin. Montreal: National Film Board of Canada. DVD. Marx, Karl. 1987. Capital: Volume 1, A Critical Analysis of Capitalist Production. Edited by Frederic Engels. New York: International Publishers.

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Swain, Harry. 2010. Oka: A Political Crisis and its Legacy. Vancouver: Douglas & McIntyre. Turner, Dale. 2006. This is not a Peace Pipe: Towards a Critical Indigenous Philosophy. Toronto: University of Toronto Press. Wright, Ronald. 1993. Stolen Continents: The “New World” Through Indian Eyes. Toronto: Penguin Books

Part III

Communication, ethical collisions, and the realities of care

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End-of-life as a symbolic order Age in an era of mechanical reproduction Alan Blum

Introduction In this chapter I want to examine the discourse circulating around the notion of end-of-life, first in terms of the centrality of physical deterioration that it assumes, and the “culture of senility” ’ that such a problem is conceived as mobilizing. Then I explore implications of such a regime upon conceptions of care for the self and for the other, reflected in the self-understanding of obsolescence as it might affect self-knowledge and caregiving. Finally, I examine some avenues of resistance organized around narrative relations to mortality that the notion of end-of-life promises to awaken in the wide-awake subject, both caregiver and aged in their care. In previous work (Blum 2011, 149–65) I investigated the self-evident connection of aging to “end-of-life” as a formula in use that resists reflection, as Vischer says (1966; quoted in Blum 2011, 153), because such an end is seen as bound up with incapacities to the point where it can only be treated as a pathogenic development. In other words, the particular problem that aging might seem to pose in life is connected so intimately with conventions for imagining physical deterioration as central that it remains difficult to conceptualize aging as a social phenomenon that is not simply determined by bodily decline or by the supposed marginalization that this produces. I want to explore implications of this passage in life for a subject conceived not simply as determined by physical limitations, but as reflected in the voice of an ideal speaker engaged by the question of the notion of aging (in the idiom of Hegel), and by the enigma it introduces as a problem to work through (see the application to teaching and learning in Blum et al. 1974).

End-of-life and physical deterioration If the end-of-life is conceived essentially as a period ruled by physical deterioration, then it should be coeval with a conception of the sick role in ways

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that make end-of-life a role relationship that has to be negotiated, suggesting that such a negotiated order, rather than physical deterioration, frames the situation. According to the conventions for identifying the sick role as such, being aged is not simply being helpless or dependent but suffering the conditions of being incapacitated and oriented to as used-up, as having diminished use value. In this way, if end-of-life invites the subject to balance conditions of body and mind, then the formula of physical deterioration as essential tends to lose the mental factor in aging or its experience, except as a response to the “stress” of physical decline. In this way, the actor (whether aged, caregiver, or “society”) is formulated as orienting to aging as if a stage determined by conditions that leave little space for a robust conception of the agency of the actor. It is not enough to contest this relationship on empirical grounds, for we must try to understand what it leaves unstated and unthought. For a sociologist this would point to the connection itself as a social relationship, as a social fact external and coercive in the idiom of Durkheim (1938), as a normative order in the words of Weber (1947). What would it then mean to be subject to physical deterioration? Much work on the sick role inaugurated by Parsons (1951, Chapter 10) and often contested can still be used to make valuable reference to the expectations that structure the experience of being sick. As I showed in my rereading of Parsons (Blum 2011), this involves the need to demonstrate real rather than spurious sickness in order to counteract the potential charge of malingering. As a role relationship, being sick always involves an implicit charge of incapacity, and so, an appeal for exemption from productivity that makes the one so designated vulnerable to such an assignment of meaning. In other words, being ill is a gesture of withdrawal from productive labor in ways that seek legitimacy and that are always contestable. This means that the motives of the sick are always matters of concern because of the fundamental ambiguity of the role (see Blum 2011, 117–24). Reading Parsons’s sick role, not as an empirical description but as a formulation of a structure of interpretations or discourse organizing the representation of illness and health in a certain kind of society, we can begin to place physical deterioration as part of such a role relationship. According to Parsons, that the enlightenment society conceives of health and illness as conformity and deviance means not that health is normal and sickness is deviance, a stipulation which itself suggests that society is unable to comprehend deeply how even good or evil is anything other than capacity or incapacity, and so, how it is always tempted to lose a grasp as any conception of value as other than functional or in relation to productivity. This type of society (personified in the figure of the modern enlightenment society) is reputed to operationalize value by equating it with capacity and further, to identify capacity with work (productive labor). (Blum 2011, 119) This implies that if physical deterioration is truly the fate of end-of-life for a subject, what is inherited is this sign of vulnerability, that is, the burden of being oriented

End-of-life as a symbolic order 137 to as dependent and as having diminished use value in collective life. If physical deterioration then functions as a sign of resignation, withdrawal, or privatization, it is this attribution that begins to constitute end-of-life as a social environment of the aged. This is not trivial, for it suggests that any such relationship as this between variables remains privileged and unanalyzed as a self-evident cliché until it is made transparent as a social course of action. Or: physical deterioration causes nothing: it is the way it is oriented to as an order that focuses this relationship. Further, when this is understood, end-of-life itself can come to view as a social relationship that varies under different conditions, specifically as a problem in modern life. The difference between what is essential and incidental to aging is a concern that would mark the reflection of such a subject conceived as treating age as other than simple growth in the way a plant grows, or as other than the longevity reflected in the fact of surviving and enduring time, or as other than collecting years in the manner of a hoarder: each such usage is only a beginning that invites us to ask what needs to be added to growth, survival, or chronology (as a relationship) to make it into aging, or to make aging eventful as a passage? In this way, the ideal speaker or subject of aging is the one conceived as oriented to a theoretic grasp of the passage. Even if physical deterioration is a frequent effect of aging, so might be a cranky disposition or many other consequences as incidentals that accompany aging as it occurs. The subject of aging must be seen as oriented to what it means to age, to the kind of relationship aging is rather than is not. This can be thought of as the ideal speaker, the one that can be imagined as theorizing aging. For example, in the most rudimentary sense, aging can be formulated as a relationship to passing time that could include everyone and anyone . . . Could we venture, in order to supplement this beginning, that aging must specify conditions that make passing time decisive, dramatic or even fatal? (Blum 2011, 153)

The formula of a culture of senility It could be expected that modern life poses a particular problem for aging and the aged, which qualifies the platitude that aging is defined by the condition of physical decline and deterioration and its survival. The typical example of this convention is marked by the idea of how senility “belongs” to old age, determining it by leaving the aged with no option but to adjust to this condition. Conceding the severity of such physical factors still does not entitle us to assume a “culture of senility” as the quintessential characteristic of old age. Typically, the identification of aging as a social phenomenon is reflected in the conception in which growing old is represented as a collective problem faced in radically different ways by modern populations. When Cohen, after Rabinow (2003; quoted in Cohen 2006, 3) and others, suggests that senility has a special relevance for critical thought, they imply that the problems it poses invite us to rethink limits of understanding

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and action both ethically and aesthetically. The usage of senility makes aging into a disease to which we must adapt and in this way tends to honor survival and endurance (for all concerned) as the best that can be done. Cohen continues: Of the three great figures of mental anguish that might be said to haunt European thought before the nineteenth century—melancholy, lunacy, and dotage or senility—the first two become central to the reflective accounting of modernity . . . Senility . . . comes to be less central to thinking modernity. (2006, 4) Here, it is the connection of aging and senility that invites inquiry, for senility is a limiting case of aging that prematurely directs us to foreclose any exploration of the discourse of aging. That is, senility and its easy ascription is simply one position in the discourse rather than its exemplary destination. So to revisit Cohen’s distinction we might ask how representations of aging make a place for associations other than senility as different voices in its imaginative structure. Or better: perhaps it is the very temptation to accept this convention of affirming senility as essential to aging that contributes to and possibly shapes the so-called “mental anguish.” To begin to track this “anguish” in the chance that it makes reference to something other than neurological disintegration, or even to the cliché that depicts aging as adapting to the stress of physical decline and impairment, we need to consider the situation of aging from a more nuanced social perspective. Therefore, there are three problems with this formula of a culture of senility: first, it risks taking one condition, perhaps an inessential one, e.g. physical deterioration, as essential to the notion of end-of-life, and so, it leaves such a conception unexplored; and second, even if reasonable, it glosses the particular way in which the character of modern life might shape the subject at such a point, giving the end-of-life a distinctive accent on reality. Finally, in connecting physical deterioration too quickly to senility, it disavows an interest in formulating the relation to physical decline as socially constructed work that must always engage the issues that Parsons discussed such as sick role, incapacity, and productivity, as ways of assigning, adjudicating, and developing responsibility and representations of modes of social participation. That is, the subject of physical deterioration is exempt or not from responsibility in ways that are not simple effects of physical factors but enter into interpretive elements of care for the self that are legitimated in collective life. To pursue such questions we need first to explore representations of modern life or the modern, and then revisit the relation of aging, end-of-life, and physical deterioration within such a context.

Modern life, keeping up, enthusiasm According to Walter Benjamin, the imaginary of keeping up is the defining mark of modernity in the sense that what recurs is misrecognized by every generation as unprecedented, qualifying keeping up as something like the perennial false consciousness of any present, the mistake of treating the temporal as eternal. This

End-of-life as a symbolic order 139 discussion is adapted from my exposition in The Lived Experience of the Dying Body (Blum, forthcoming 2016). The “modern,” the time of hell. The punishments of hell are always the newest thing going on in this domain. What is at issue is not that “the same thing happens over and over” and even less would it be a question of eternal return. It is rather that precisely in that which is newest the face of the world never alters, that the newest remains, in every respect—the same—this constitutes the eternity of hell. To determine the totality of traits by which the “modern” is defined would be to represent hell. (Benjamin 1999, 544) What is hell, the modern, names how the same is always disguised in and as the new, the old manifesting itself as new. This is the “delineation of the ‘modern’ as the new in the context of what has always already been there” (Benjamin 1999, 544) Thus the modern is prone to a degree of unreflective enthusiasm that is always tempting, joining the relation of keeping up to going back in a dialectical embrace that will need to be mediated. Foucault, in his lectures, reformulated Benjamin’s conception of keeping up as enthusiasm for the present, particularly with respect to the imaginary of the enlightenment (Foucault 2010, 14–21): “It is the question of the present, of present reality . . . What is this ‘now’ in which we all live and which is the site, the point (from which) I am writing?” Foucault has Kant first pose the question of the modern in such terms: “it seems to me that in this text by Kant we see the appearance of the question of the present as a philosophical event to which the philosopher who speaks of it belongs” (Foucault 2010, 12). Foucault’s formulation of this engagement with the present as a topic frames the question of the modern, the overarching concern to and for the subject of the modern. What is my present reality? What is the meaning of this present reality? And what am I doing when I speak of this present reality? It seems to me that this new questioning about modernity consists in this. (Foucault 2010, 14) Here, if we see Foucault remaking Benjamin’s suggestion on the relation of the modern to enthusiasm for the present, we can also note that such enthusiasm can be expected to be recurrent, the Same, and so always in need of specification since, as Benjamin (1999, 545) says, if “Every age unavoidably seems to itself a new age . . . [then] [t]he ‘modern,’ however, is as varied in its meaning as the different aspects of one and the same kaleidoscope.” This leads Foucault to specify this variation historically as an imaginary event, in his case under examination, as “enlightenment” and its crucial trope the French Revolution. It is not the behavior of the Revolution but the eventfulness of its occurrence as a sign of the present, as an imaginary relationship, that is essential. What is significant about the event is the enthusiasm it mobilizes.

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So here we have a translation of Benjamin’s engagement with enthusiasm in any present as its modern moment, always raising the question of keeping up as the question of the modern. This alerts us to the possibility that the problem of the aged as a subject of modern life is not simply one of adjusting to physical deterioration, but of placing any effects as such within a context that enforces as legitimate the demand to keep up and to care for the self under conditions of such a valid order. This suggests further that under modern conditions the problem of the aged is to develop a relationship to their diminished use value and to the need to negotiate the relationship of obsolescence to keeping up.

Obsolescence I am proposing that the convention associating end-of-life with physical deterioration risks misrecognizing the “real” problem of the aged in modern life of suffering the exhaustion of use value created in part by the normative demand to keep up. As I posed it (Blum 2011), the problem of end-of-life is the problem of being seen as obsolete, and so, the problem of being divided in that sense between the desire to be in and of the present and the experience of uselessness that can circulate around this locus of attention. The function of aging and the fascination with the aged is connected to obsolescence. Why this is interesting can be appreciated by reading Benjamin’s . . . comment on the enthusiasm of each generation towards the up-to-date and timely, for it is by virtue of the enthusiasm which each generation ascribes to its present that Benjamin defines modernity itself. (Blum 2011, 159) Thus, if modernity accentuates the fetish of needing to be contemporary and to “keep up,” then we might see this as a particular problem for those reputed to suffer breakdown. Indeed, the mechanical conception of this relationship—of aging vis-à-vis decline, deterioration, and breakdown—seems to highlight the modern problem for any subject as one of needing to deal with obsolescence. Thus, the tropes of breakdown, and the requirements of prosthetics and repair work, of maintaining the longevity of the body as a machine, must focus upon the technē of the relationship to the aged in ways that make the passage in its entirety an acute crisis where even a long life is accepted as an unhappy result. That is, when the passage is treated as pathological and marked by decline, custodialism and

End-of-life as a symbolic order 141 pity seem the only viable responses to such repair work. Here, breakdown means the exhaustion of use value, and so, the condition of being useless. The framework enabling obsolescence to be of primary relevance orients to aging and the construal of the aged at end-of-life as a function of the inability to conceive of use value in assumed incapacity, expressing the tendency to think of sentimentality as the only option for engaging the unproductive. This raises the question in collective life of how the useless can be sustained, raising concerns for responsibility for the aged that require commitment in excess of an exchange model, reciprocal transactions, and a restricted economy (for a discussion of some of these issues, see Blum 2011, 149–50, 155–7, 162–3). Typically, the problem is posed as one of justifying the costs for society in sustaining the useless, causing us always to query this notion of use and how it could be challenged by asking after the value that the aged might be seen as bringing to collective life, that is, for the value of such uselessness. Whether or not end-of-life is correlative with sickness, it still brings to view aging as a convention that always needs to be grounded. That is, in ways similar to any category such as gender, race, and the like, the formula always invites us to ask (in this case) what value does age bring to collective life, as a question that opens inquiry into the social form of the relationship. I will take this question up eventually.

Structures of care Such a normative view of the passage and its typical expectations can influence programs of care for the aged (caregiving) by structuring courses of action along lines such as comforting and alleviating physical distress, managing pain, and the various necessary custodial strategies for making the time endurable. It is this convention and its normative expectations that need to be questioned. In all such cases the end-of-life is treated as self-evident and the subject as passing time in the way of doing time, in captivity to the inevitability of an end but without any orientation to what such inevitability seems to require now and make possible for conceptions of past and future. Yet even such measures should mobilize the capacities of the wide-awake witness or caregiver to imagine a subject oriented to an end in ways that invite a phenomenological approach to care and to the passage, that is, a subject needing and desiring to understand the end-of-life as an occasion to re-center the question of the purpose or telos of life (the sense of “end” emphasized from the Greeks on and identified by Foucault in his late writings as care for the self). This focus begins to implicate the caregiver or witness in the passage in the same way by inviting a mutually oriented exploration of the sign of mortality for the living in life itself. This would begin to dramatize the endof-life as requiring something more than adaptation to physical deterioration along the lines of a stimulus-response model.

Rethinking mortality Does modern life make a difference for the aged? Certainly conveniences offered by technologies can alleviate physical distress, but we might wonder if the notion

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of end-of-life as a passage undergoes a fundamental alteration. We might ask how the conventions for imagining end-of-life are influenced by modern conditions. For example, does Walter Benjamin (1969a) propose that the end-of-life is reconfigured under conditions of mechanical reproduction? In one respect we might admit that under such influences all sorts of scenarios for enduring the end-of-life are constructed and represented through media of information and entertainment. As scenarios these representations abound in identifying different regimes for aging, different means and methods of doing time. I described some of these strategies (Blum 2011, 149–65) and they circulate in many analyses of leisure, retirement, palliative care, assisted home living, pharmaceutical regimes, etc. In all such cases an attempt is made to translate the end-of-life into a problem of everyday life that can be managed as a practical affair. Most of these studies, often reputed to be sociologically oriented, show the aged as problem-solving actors working to construct a credible social world, a “negotiated social order,” in ways that would only seem to be distracted by any ongoing reflection upon mortality because of its morbidity. So one way of thinking about the aged as oriented more positively to value could propose translating the collective representation of the apparent morbidity of death into “equipment for living” (Burke 1973, 293 ff.) without forgoing its sadness for any subject. When such a distraction does occur, as in About Schmidt, at the point on his drive home after the wedding of his daughter where the character contemplates the meaning of his life for himself and for whosoever might care or come after, the unbearable tension has to be resolved by an antidote. At this point, the voice of the subject is treated as the sign of an acute crisis, a critical moment, in terms of which any witness could only experience impotence insofar as formulaic expressions of sympathy and gestures of support seem sterile. This is to say that while it is possible to introduce a reflective gesture into the discourse, its unsettling character as a truth must be engaged by the witness or caregiver as requiring something other than a palliative and formulaic response. This is the task that frames any strong relationship to the aged.

Death and age If, as we suggest, age is a universal that requires specification in order to be distinguished from chronology, this supplement or “something more” added to distinguish the notion from being what Benjamin (1996, 206) calls a “scarecrow of determinism,” seen as governed by physical decline, is typically identified as a relationship to impending death as if what age brings to the table or contributes to a reflective life is an awareness of finitude. But this tends to make reflection dependent upon chronology in ways that remain unattainable throughout life in the absence of such urgency, always needing a crisis of such magnitude to emerge, converting reflection itself into a condition that is as mechanical as any condition. Indeed, if sensitivity to death is a powerful element in the passage of aging, we note also that death, a universal similar to age that falls upon all, needs its own specification (see Blum forthcoming 2016, Chapter 12). So if aging “causes”

End-of-life as a symbolic order 143 a reflective relation to death, even for weak rather than strong reasons, what makes death essential to life other than the fact that it happens to all? This is a question Simmel (2007, 74) in particular raised and tried to engage. Even if the advancement of death were not to be found in progressive signs such as the hardening of blood vessels . . . so too may death be seen from another direction as linked from the outset with life, even if it—or a part of it—cannot be identified as a reality at each moment. However, in every single moment of life we are those who must die, and this moment would be different if this were not in effect our predetermined condition . . . Death limits, that is, it gives form to life, not just in the hour of death, but also in continuously colouring all of life’s contents. The limitations of life’s totality by death influences each of life’s contents and moments: the quality of each would be different were it to extend beyond this immanent boundary. Note that the universality of death means not simply that it happens to everyone at some time but that it pervades life (at all times and stages) with “form-giving significance.” This is because the aura of death gives form and significance to life in ways that can (at best) sharpen a sense of life, its point, purpose, and end, not only through positive investments in purpose and meaning as such, but also negatively insofar as such form might give meaning through appeals to inexorable inaction, groundlessness, despair, and gnosticism. Simmel’s point is that the aura of mortality as unspoken limit upon life, its Other so to speak, animates the question of the end-of-life throughout life and not just at the point of impending death and physical disintegration. To say it phenomenologically, the wide-awake subject must use the image of limitation evoked by death to think through the question of the end-of-life, its point or value. To pursue the syllogism to a conclusion: if aging contributes to life an intensification of the dramatic awareness of limitation, then in the face of externals such as physical decline and deterioration, the end-of-life as a passage must raise for its subject the question of the good of life and how to develop a relationship to such a problem. If the question of the worth of the aged is raised as if a sign of breakdown and exhaustion of use value, that question should make contact with the concern for the value of life raised at the end, focusing upon the irresolute enigma of the worth of this particular life hic et nunc in relation to the value of life per se. At this point it should be seen how I am approaching Cohen’s (2006) forms of “mental anguish” correlative with aging as both normal social fact in Durkheim’s (1938) sense of conditions to engage, and as the lineaments of a discourse with mean and extreme positions in a way that marks senility as simply one posture or kind of adaptation. In response to those who would say that I am minimizing the causal force of the body and physical deterioration, I claim to be reversing the sequence, acknowledging the body as a condition that influences the intuition of morality and its inevitability. Yet where medical science introduces “the mental” typically through clichés of stress that make mind an adaptation to, say,

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deterioration or disease (and the slow death model does this by conjuring up capitalism as a stress-producing machine), I am suggesting that any such condition is only exacerbated by the intuition of mortality that interacts with the body to produce symptoms that disguise the force of the intuition itself. Even more, I could propose that resignation in the face of such a recognition is a forceful condition in the physical deterioration of aging, and in the language of what Cohen calls senility.

The story Thus, even physical deterioration at the end-of-life is ruled by the demands of keeping up that can create an aporia for both the normal and the lofty (see King Lear’s madness) around the fear of being unrecognizable at present, and so, of being lost to a future unless redeemed through some narrative gesture. Modern life can not only accentuate this fear through its forgetfulness of what is left behind, but contributes in other ways by condensing the life into a record. Thus, the file or record typifies the life as a career of milestones that must gloss the intimate register that only a story can evoke. The wide-awake aged must orient to the division between their life as a record and its intimate depth in story. This is why the end-of-life, marked as it often is by signs of physical decline and disintegration, must still remain a relationship that is guided by the need and desire to make sense of the enigma of the relation of beginning to end, of what this end (of life) might begin, and how the beginning that was and is this life at present might end. Any care worth its name has to recognize how the subject of old age must bear this relationship and work it through as a quest that need be witnessed and not simply endured in formulaic ways no matter how kindly. Historically, the various modes of communication have competed with one another. The replacement of the older narration by information, of information by sensation, reflects the increasing atrophy of experience. In turn, there is a contrast between all these forms and the story, which is one of the oldest forms of communication. It is not the object of the story to convey a happening per se, which is the purpose of information; rather, it embeds it in the life of the storyteller in order to pass it on as experience to those listening. It thus bears the marks of the storyteller as much as the earthen vessel bears the marks of the potter’s hand. (Benjamin on Proust 1971, 159) Here, the task of the story is seen in its struggle to revive the relation between the experiences suffered in a life and the enumeration of happenings that the person bears as if a record of information. The story must struggle, perhaps impossibly, to sustain this connection, to do such revelation through a renewed attention to eloquence required to make end-of-life the focus of life itself in any story. Old age sets for itself in such a desire the task of socializing its own temptation to mental anguish.

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The proper burial Benjamin’s (1969b) formulation of the story as buried beneath the name of a person in the way that a ruin stands to the untold history it might summon up (see also Blum 2011, 63–87) permits us to see the struggle of age to deal with the tension between the absolute sense of loss of what is intimate and singular for the subject within the context of the relativism or uniformity of death as the event that happens to all (see my discussion in Blum 2014, pp. 19–36). Thus, death can be treated as a thing in the sense of a newsworthy event or happening in the way Gertrude Stein (1935) speaks of the newspaper, or as recorded in an obituary, or conversely as a story that reconstructs a convoluted history of desire. Benjamin’s distinction allows us to begin to rethink the position of the one who tries to tell the story as the subject whose life and death is the topic, aspiring to resist being “news” consumed at the moment of extinction as if a name that is destined to pass out of circulation and no more. In other words, the story is a struggle over the destiny of the name and whether or how it is to be given proper burial. The value of information does not survive the moment at which it is new. It lives only at that moment . . . A story is different. It does not expend itself. It preserves and concentrates its strength and is capable of releasing it even after a long time. (Benjamin 1969b, 90) The story of a person is buried under the name. The name of the one named, instead of enumerating detail and chronology, conceals much like the outer mark of the “inner sense” or spirit of whatever it names. In the course of modern times dying has been pushed further and further out of the perceptual world of the living . . . It turns out that this change is identical with the one that has diminished the communicability of experience to the same extent as the art of storytelling has declined. (Benjamin 1969b, 93–4) In other words, the tendency to treat the name of a person as simple information or as a record of sorts, rather than as the outer shape of an untold story, corresponds to the avoidance of death as a topic. Accordingly, even the biography that enumerates activities, achievements, scandals, mishaps, and glories must gloss the work and suffering that enters into the record as a kind of untold story that might lie beyond denunciation and encomium as an intimate order. According to Benjamin, this is because death as the very topic of the story of a person and of the life behind the name is denied by treating the name as a mere record of information or as an archival trace, because the story of a person, when we truly listen, brings us face-to-face with the story of death. It is, however, characteristic that not only a man’s knowledge or wisdom, but above all his real life—and this is the stuff stories are made of—first assumes

146 Alan Blum transmissible form at the moment of his death. Just as a sequence of images is set in motion inside a man as his life comes to an end—unfolding the views of himself under which he has encountered himself without being aware of it—suddenly in his expressions and looks the unforgettable emerges and imparts to everything that concerned him that authority which even the poorest wretch in dying possesses for the living around him. This authority is at the very source of the story. (Benjamin 1969b, 94) Simmel and Benjamin imply that death needs to be the unspoken aura of any story (and life). Is this what aging begins to teach us about mental anguish, dramatizing for us its particular contribution to a grasp of the human condition? This is because the intimate order, like the image of death, summons to mind the trace of an order lying beyond representation itself, the trace of an infinite surpassing that a story can only reveal as that unspeakable surfeit against which its discriminations must move. We begin to appreciate that the mental anguish particular to aging must disclose the problem of the proper burial as a question both imploring and exhorting the witness to connect past and future, finite face and infinitely more, in an action that lays to rest in any present all of the possible imaginings about being laid to rest. This is the reassurance Lear wanted from his daughters. The relationship between the story, end-of-life, and the need for proper burial is typically expressed in the imaginative relationship to inevitability. Thus, Kate Powis (2007) engages Seale’s work (Constructing Death) to ask the question “can the dying mourn?” by trying to show the limits of Freud’s conception of mourning for one who has not yet lost an object as if the not-yet-dead have nothing past to grieve except others, making self-loss apparently incoherent. Powis suggests that instead of anticipatory mourning (a contradiction) we think of the fear of annihilation (powerlessness, meaningless, nothingness). This idea that the struggle of ego with the lost object and the libidinal attachment it creates cannot describe the end-of-life as an imaginary relationship seems limited by its conception of the indivisible sovereign self and its rationality. Thus, this interesting question dramatizes how the temporal existence of a self needs to be conceived as a mix of the finite and the infinite (see Hegel 1968), revealing how the finite condition of anticipation or looking ahead necessarily connects to a capacity to imagine at present the future looking back at this present as its past, as what has been, that the loss anticipated by the self must proceed “in advance” of the loss itself in any imaginative construal, meaning that the self imagines hic et nunc at present the loss of what is, making anticipatory mourning the realization of dispossession in any present, and so, a capacity for mourning that always must resist resignation, privatization, and depression. End-of-life then asks of its subject to develop a relationship to dispossession that is mournful rather than melancholic as the problem-solving situation to be addressed. Here, the story becomes such a means because it seeks some reassurance that preservation is possible in the face of an impossible guarantee. Finally, this discloses that the

End-of-life as a symbolic order 147 story of end-of-life has to refocus the question of the beginning of life for any other, of the limits and point of life. We might even go as far as to translate Foucault’s contributions from his later writings to say that care for the self, of both one and any other, its conditions of success and failure, taking its measure in relation to the concern for the point of life, has to be the topic of the story.

References Benjamin, Walter. 1969a. “The Work of Art in the Age of Mechanical Reproduction.” In Illuminations, edited by Hanna Arendt, translated by Harry Zohn, 217–52. New York: Schocken Books. ——. 1969b. “The Storyteller: Reflections on the Work of Nikolai Leskov.” In Illuminations, edited by Hanna Arendt, translated by Harry Zohn, 83–110. New York: Schocken Books. ——. 1971. “On Some Motifs in Baudelaire.” In Illuminations, edited by Hanna Arendt, translated by Harry Zohn, 155–200. New York: Schocken Books. ——. 1996. “Fate and Character.” In Walter Benjamin: Selected Writings, Volume 1: 1913–1926, edited by M. Bullock and M. Jennings, 201–6. Cambridge, MA: Belknap Press of Harvard University Press. ——. 1999. The Arcades Project. Translated by H. Eiland and K. Mclaughlin. Cambridge, MA: Belknap Press of Harvard University Press. Blum, Alan. 2011. The Grey Zone of Health and Illness. Bristol: Intellect Press. ——. 2014. “Aging as a Social Form: The Phenomenology of the Passage.” Journal of Medical Humanities 1, 19–36. ——. Forthcoming 2016. The Lived Experience of the Dying Body. London: Routledge. Blum, Alan, Peter McHugh, Stanley Raffel, and Daniel Foss. 1974. On the Beginning of Social Inquiry. London: Routledge & Kegan Paul. Burke, Kenneth. 1973. The Philosophy of Literary Form. Berkeley, CA: University of California Press. Cohen, Lawrence. 2006. “Introduction: Thinking About Dementia.” In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility, edited by Annette Liebing and Lawrence Cohen, 3–19. Piscataway, NJ: Rutgers University Press. Durkheim, Emile. 1938. The Rules of Sociological Method. Edited by G.E.G. Caitlin. Translated by S.A. Solovay and J.H. Mueller. Chicago, IL: The University of Chicago Press. Foucault, Michel. 2010. The Government of Self and Others: Lectures at the Collège de France, 1982–1983. Edited by A.I. Davidson. Translated by G. Burchell. New York: Palgrave Macmillan. Hegel, G.W.F. 1968. The Logic of Hegel, 2nd Edition. Translated by Wallace. Oxford: Oxford University Press. Parsons, Talcott. 1951. The Social System. Glencoe, IL: The Free Press. Powis, Kate. 2007. “Can the Dying Mourn?” In Layers of Death and Dying, edited by K. Woodthorpe, 87–96. Oxford: Inter-Disciplinary Press. Simmel, Georg. 2007. “The Metaphysics of Death.” Translated by U. Teucher and T.M. Kemple. Theory, Culture and Society 24(7/8): 72–7. Stein, Gertrude. 1935. Narration. Chicago, IL: The University of Chicago Press. Weber, Max. 1947. The Theory of Social and Economic Organization. Translated by A.M. Henderson and T. Parsons. New York: The Free Press.

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Good patient–bad patient The ethical imaginary of cancer Deborah Lynn Steinberg

Introduction1 Cancer, as Susan Sontag suggested in 1978, has long been a cultural touchstone, a metaphor of devastation and a spectre of social as well as bodily anomie and loss. Yet recent years have witnessed significant transformations in perceptions of cancer, particularly in perceptions of the cancer patient. This chapter is interested in the emergent ethic of care that underlies this “transvalued” cancer culture and particularly in the moral and cultural capital that has pervasively attached to the cancer patient as culture warrior. The analysis that follows takes up two intertwined case studies: on the one hand, the celebrity-scaled coalescence of what might be termed cancer’s warrior ethic, in the “brave face” of Angelina Jolie; and on the other, the “background noise” of everyday cancer representation, as deployed through the dominant tropes of cancer advertising. As this chapter will argue, this everyday imaginary sets the stage for the amplified Jolie-fication of cancer culture more broadly. The chapter begins with an account of the emergence of Jolie as the touchstone figuration of the cancer imaginary. Turning its focus to a longrunning advertising campaign for Memorial Sloan-Kettering Hospital, the chapter then pursues three interlinked arguments. First is that contemporary cancer culture involves a potent articulation of popular, biocultural, and medico-commercial discourse, of which medical advertising is a salient case in point. Second is that the cancer patient has become a primary object of transference, typically represented as an edifying subject and a figuration of moral entitlement and moral capital. Third, and more specifically, is that the phantasmatic “good patient” embodies a distinctively neoliberal ethic of care—that is, body-affective imperatives of will, affect, and action—that constitutes cancer as an imperative field and in which an imperative of estrangement is a core dimension. As this chapter argues, cancer, in this intermediated space, has been recast such that its preeminent ethic of care is chiefly constituted by care’s repudiation.

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Cancer, “care,” and the Jolie effect Angelina Jolie reveals she has had preventive double mastectomy. (Haynes 2013, guardian.co.uk) Will Angelina Jolie’s mastectomy inspire other women to follow her lead? (Leung 2013, globeandmail.com) Jolie’s cancer risk shared by others with genetic flaw. (usatoday.com 2013) Angelina Jolie’s genetic self-ownership is the future of medicine. (Gillespie 2013, reason.com) After Jolie’s disclosure, cancer group urges caution. (Sun 2013, washingtonpost.com) A Standing ovation for Angelina Jolie. (Ahmad 2013, jezebel.com) On May 14, 2013, the actress and celebrity Angelina Jolie published in the New York Times an article entitled “My Medical Choice.” In this article, she disclosed that she had undergone a prophylactic double mastectomy and breast reconstruction following diagnosis of a “faulty” BRCA 1 gene. This was in the aftermath of the widely reported loss of her mother in 2007, who died of ovarian cancer at the age of 57, and a maternal family history of breast and ovarian cancer.2 Jolie’s article elicited what might be described as a “measured torrent” of international media commentary and reportage. The tone of this commentary generally tempered shock at the nature and extremity of her prophylaxis with homage (albeit in some cases uneasy homage) to Jolie herself. The escalating reportage also quickly coalesced around a number of emergent tendencies and motifs, all of which are relevant to the subject matter of this chapter. First was the juxtaposition of the languages of genetic risk, fighting cancer, and informed choice, which not only allowed, but also rationalized and normalized the extremity (and for some, brutality) of Jolie’s decision. In this context, Jolie could be framed as a breast cancer patient though she did not have breast cancer and might never have gone on to have it.3 A zero-sum response to a far from certain science4 (about a terrible disease that one could get) could seem, albeit with some unease, logical and proportionate. And “genetic self-ownership” could be invested with both moral imperative and moral capital.5 Second was the conjunction of cancer and gender, articulated on the mutually reinforcing terrains of female beauty culture and celebrity, the former, with its particular fetishization of female breasts, and the latter, which amplifies the body reflexive imperatives of feminine capital. Jolie’s particular status as public body— “the most beautiful woman in the world”6—both jarred with and provided an additional interpretive frame for her perceived bravery to disclose, to acknowledge herself as genetically “flawed,” and to undergo a gruelling remedy. Perhaps the most prominent motif of the reportage of this event was the continual and

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disturbing juxtaposition of stock images of Jolie’s face, lips, and breasts with sober, at times highly technical, explanations of genetics, breast cancer markers, citations of risk, and graphic accounts of mastectomy and reconstruction surgeries (including Jolie’s own procedures). Indeed, it was specifically the willing sacrifice of her breasts, which along with her face have been central to Jolie’s feminine capital, which both jarred with and amplified her personal cultural stature. Her own article precisely addressed this unease by asserting that in so doing, she did not see herself as sacrificing her femininity or self-understanding as a woman.7 Significantly, the media response to Jolie’s follow-up article (Jolie 2015), focused on her more recent decision to pursue a preventive double oophorectomy, while widely reported, had little of the amplified projection that attended her earlier surgery.8 Of particular relevance to this chapter, however, was a third theme, the framing of Jolie (in part constituted by her framing of herself in her original article) as an edifying subject. As suggested in the selected headlines above, both the concern and the plaudits that greeted the news of Jolie’s decision were filtered through a permissive-imperative vernacular of “inspiration.” On one side of this was the construction of Jolie as a barrier-breaking and empowering figure for the ordinary woman: that is, if “the most beautiful woman in the world” could come to this radical decision, this would ameliorate the stigma or desolation of mastectomy (and hold out the promise of restorative reconstruction). At the same time, Jolie’s personal wealth insulated her entirely from the gross inequities of health care that constrain the choices, availability, and quality of care available to most Americans (and indeed, to most non-Americans).9 This, plus the particularities of her own medical history (and the realities: (a) that most cases of breast cancer are not correlated with BRCA gene mutations; and (b) that, by contrast, having a BRCA mutation does not determine that one will go on to develop breast cancer) means, however, that her situation cannot be globalized. Notwithstanding these considerations, the “inspirational” framing of Jolie has proliferated in and through the cancer imaginary (see Figure 8.1), as head shots of Jolie appear as part of a triumvirate of stock photographic cancer referents,10 alongside the ubiquitous iconography of the mammogram11 and the photographically rendered cancer cell. The dominant motifs surrounding Jolie’s story are not new. Rather, they represent an amplification of what this chapter will argue are normative institutionalities and everyday non-remarkable sensibilities surrounding cancer. Jolie stepped not only into an established medico-commercial cancer industry (and a peculiarly American one at that), but also into a relatively recent mode of cultural discourse that has reconstituted the cultural status of cancer and of the medicomorality of patienthood.

Signification and the cancer imaginary In its examination of a distinctive trajectory within the signification field of cancer, this chapter deploys analytic resources drawn from critical discursive and cultural psychoanalytic traditions within media studies and is located centrally within a feminist social semiotic tradition.12 First, drawing from a long tradition

152 Deborah Lynn Steinberg of feminist semiotic studies of advertising (Williamson 1978; Mort 1996; Nixon 1996; Kilbourne 1999), it focuses on a specific advertising campaign—that of the prominent USA cancer hospital Memorial Sloan-Kettering—as a case study of a larger significatory field.13 The campaign, on the one hand, directed to a very particular and arguably narrow middle-class demographic, at the same time both draws from and reinforces tropes of cancer survivorship and patienthood that constitute a terrain of popular intelligibility beyond its own particularities and parameters. Advertising is not produced in a vacuum. Rather, it is a mode of utterance, deployed in and as narrative or discursive fragments, whose intelligibility

Figure 8.1 Event Flyer circulated via Facebook, Congregation Tikvat Jacob http://ctjmb. org/ (see also www.theguardian.com/society/2014/sep/19/angelina-joliebreast-cancer-study)

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presupposes a wider, shared meaning field, a realm of common sense, in other words, that enables the viewer to fill in what is invoked without having to be spelled out. This chapter is thus interested in what might be termed the field of intelligibility that constitutes (and reciprocally is constituted by) the distinctive features of the Memorial Sloan-Kettering advertising campaign as a point of reference for a larger constellation of public cancer discourse and popular cancer meanings. Second, in social semiotic terms, the chapter is also interested in the intersection of representation and social relations. This begins with a foundational understanding of signification as both materially constituted and materializing. I refer here to Butler’s (1993a) understanding of signification as embedded in and constitutive of material reality, rather than epiphenomenal to it. This is in part because representation is anchored in and both produced and consumed through material institutional contexts and processes. Media cultures, in other words, constitute and are constituted by not only circuits of meaning (Johnson 1986–7) but by circuits of material relations.14 In addition to filling in, a further dimension of the material anchoring of signification is affective—the modes of attachment (or repulsion) that engage viewers (and producers) in a project of meaning and that, in turn, sediment and fill out public discourse. The Memorial Sloan-Kettering advertisements thus constitute not only a mode of public understanding of cancer, but public feeling. This chapter also engages (and engages with) several further framing resources. First is Sontag’s seminal critique of the (destructive) cultural dimensions of cancer, set out in Illness as Metaphor (1990). Second is Sander Gilman’s (1991) concept of “transvaluation,” which he used to describe instances of critical reversal of the negatory character of racial discourse (for example, “black is beautiful”). And third is Frank Mort’s (1987) study of “medico-morality,” which explores the moral-discursive character of medicine and its triangulation with politics, popular commonsense and, in his case study, the historical regulation of gender and sexuality. It is also important to note that this chapter takes some of its impetus from the growing cluster of studies specifically interested in the political, economic, and cultural dimensions of cancer. These include critical assessments of the pinkification of breast cancer15 (King 2006; Ehrenreich 2009; Sulik 2011); critical evaluations of the turn to “evidence-based medicine” (Goldenberg 2012); and meditations on the ontological conflicts and ambiguities that underpin cultural as well as clinical paradigms of cancer patienthood (Stacey 1997; Jain 2007; Klawiter 2008). Of particular relevance here is Jain’s (2007) exploration of the temporal-ontological imperatives embedded in the public as well as clinical imaginary of cancer.

Cancer in advertising: medico-commercial discourse MEMORANDUM: Date July 14, 2001. To: Cancer. From: Barbara. Your Occu-

pation in my body has been officially terminated. Effective Immediately. Sincerely, Barbara. (Memorial Sloan-Kettering Cancer Center, Advertisement 2009–2013)

154 Deborah Lynn Steinberg Karen searched far and wide for the right breast cancer treatment. Then she moved 750 miles to get it. (Dana-Farber/Brigham and Women’s Cancer Center, Advertisement 2009) 18 MONTHS after cancer surgery, a young woman celebrated the one year anniversary of when other hospitals said she would die. (Mount Sinai, Advertisement 2010) At 14, Ryan Wenke faced losing a leg to bone cancer. At 15, her biggest problem was which boy to go to the dance with. (Mount Sinai, Advertisement 2009) I’m here today because I never quit fighting my cancer. (Novartis, Advertisement 2010) Hail to the Victors Valiant. (University of Michigan Health System, Advertisement 2009) Hey Cancer Kiss My Butt. (Cancer Research UK/Tesco, Race for Life, Advertisement 2013) In 2009, following a year of cancer treatment, I began to systematically collect an archive of cancer-related advertising across both print and television formats. Owing to my circumstances, and not, I suspect, unlike other cancer patients, I became hyper-aware of public cancer discourse. Advertising struck me particularly, in part because it seemed to triangulate, to exactly encapsulate, and also to deny, the frequently irreconcilable and overwhelming cross-currents of clinical, intersubjective, and cultural expectation on the one hand and, on the other, the material realities that colonize the day-to-day life of a cancer patient. The archive I amassed16 includes print advertising (the main focus of this chapter) as well as television advertisements. Print advertisements are predominantly from internationally circulated USA magazine sources, focusing in particular on The New Republic, The New Yorker, The Atlantic, and the New York Times Magazine. Some were also drawn from sources I encountered in the UK, for example from Elle (UK) and InStyle Magazine (UK). The archive includes 23 separate print advertising campaigns, many of which ran over a number of years (some are still running) with multiple versions of the basic format. These campaigns include cancer hospitals, charities and charity events, health insurance, cancer research, and cancer support services. The television advertisement archive includes examples from Canada (including those imported from the USA) and the UK. All of the campaigns I have examined share a number of features. First, as already mentioned, is the longevity of a number of their formats. For example, Memorial Sloan-Kettering Cancer Center has six versions of the same advertisement that

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have been running regularly (and interchangeably) in the New York Times Magazine for at least the past 4 years.17 Four other campaigns took this approach (Cancer Research UK, “Cancer we’re coming to get you”; Dana-Farber/Brigham and Women’s Cancer Center, “Amy,” “Karen”; MD Anderson, “Making Cancer History”; Mount Sinai, “Another day, Another Breakthrough”). All of the television advertisements either produced multiple versions of a comparably formatted cancer-related advertisement (MacMillan (UK); Princess Margaret Race for the Cure (CA); Gardasil HPV Vaccine, “I chose” (USA/CA)), or represented a cancer-focused “episode” from a larger series (BUPA (UK)). Second is their character as advertising. Advertising is a distinctive media context and a point of convergence for multiple institutions, in this instance a nexus of clinical, pharmaceutical, charity-activist, research, and commercial interests.18 Advertising both represents and deploys discursive resources for wider public understandings, sensibilities, and imaginaries, articulating modalities of production and consumption and standpoints of author and viewer. This is perhaps most powerfully articulated in the context of medical and pharmaceutical advertising (pervasive in the USA and Canada), which commercial, educational, and public health idiomatics uncomfortably elide (see, for example, Mamo and Fosket 2009). It is certainly the case that unless one is a cancer patient (or involved with one), understanding of cancer comes primarily through cultural intermediation and media-cultural policy, of which cancer-related advertising is least confined to the niche audienceships that characterize cancer’s representation in arts, literature, film and television, and even digital media. Even the daily news does not include daily news about cancer. Where audienceship of the latter (representations in literary, artistic, and other media forms) is generally sought, for advertising, audienceship is for the most part captive.19 A third aligning feature of my sample, particularly accruing to the magazine advertisements, is its consistent address to a middle-class preferred readership. This is constituted not only as an extension of the target demographic of the magazines, but also of the idiomatic location in discourses of consumer/rational choice and presumptions of capital, including high degrees of literacy and educated entitlement.20 Perhaps the most powerful feature of the campaigns I followed (televisual and print), and exemplified across the tag lines quoted above, is their articulation of commercial, medical, and moral-discursive meanings, presenting not only products (e.g., cancer services, cancer information, cancer insurance) in the marketized frame and middle class idiom of consumer choice, but also a language of moral imperative, most prominently personified by and deployed through the first person address of the cancer patient. As suggested in Mort’s (1987) foundational study, morality in this context does not simply refer to a set of particular moral ideological principles or propositions, but also to a modality of imperative—agentful, affective, intersubjective, and materially-institutionally mediated. It is this latter point with which this chapter is most concerned and that emerges most forcefully across the sample, in a number of common tropes, vernaculars, and modes of address, and is potently elaborated in the Memorial Sloan-Kettering campaign. The classed assumptions built into the contexts of its

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distribution, as I shall argue, also articulate—through the nuances of its address to and its reconstitution of its primary demographic—a preferred modality (and preferred morality) of survivorship. Nearly all of the campaigns I encountered use the trope of the first person address, with their attendant, insistent, instructional summons to the reader. One of the first advertisements I encountered in this context was for Gardasil HPV vaccine (2008), which was screened, it seemed to me at the time constantly, and which aggressively encapsulated this trope. Its tag line, spoken face front to the camera by an edifying every-girl-cum-every-patient-cum-responsible consumer: “What would I do to protect myself? Anything I can” (my emphasis).21 The testimonial form of first person advertising campaigns has a number of effects. First, they draw subliminally on a peculiarly American version of confessional/testimonial, itself a discursive hybrid of social justice activism (the Civil Rights Movement, consciousness raising) and self-help therapeutics (Epstein and Steinberg 2003). They also, at least at first glance, appear to humanize the subject of cancer—in both senses. They suggest a locus of humanity (which counters cancer’s existential threat) and they offer a containment of cancer’s meaning to the individual and their world. They also offer an ordinary mode of discourse—from me to you—that both supersedes and offers a place of personal recognition and projective personal agency that, by right, will not be overwhelmed (either by being blinded with science or corralled by treatment regimes). In the discussion that follows, I will explore the Memorial Sloan-Kettering print advertising campaign, focusing on one particular exemplar from the series, “From Barbara,” to more closely examine this significant strand of the discursive, medicocommercial logics, languages, and visual repertoires of the cancer culture. The Sloan-Kettering campaign, which at its core is a hospital touting for business, emblematizes a ubiquitous culture of medico-pharma advertising and is itself an artefact of the interlocking of medical and commercial interests and of medical services with a commercial–industrial complex and a corporatized popular imaginary. My discussion of this campaign is concerned with three overarching subjective tenses as they are elaborated through the visual, linguistic, and compositional elements that constitute the Memorial Sloan-Kettering brand. These are what I have termed, on the one hand, the edifying I—the “I” asserted as exemplary subject, and on the other, and accruing to the exemplary subject, the exhortative you—the consequent requirements of you, the reader/addressee. Both are modes of address that imply a morally ordered imaginary and a hierarchy of relative standing visà-vis self and other. The third subjective tense, implied rather than addressed, is the I estranged, outlier subject, neither edifying nor addressed.

“From Barbara”: cancer, commerce, and cultural affect The ad, “From Barbara” (Figure 8.2), is one of a long-running print-advertisement campaign by Memorial Sloan-Kettering22 that includes 6 separate first person images—of which 5 feature women, and of which 5 present subjects who are white.

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Between 2009 and the present, it has appeared as part of a repeated sequence in the New York Times Magazine. As already noted, the campaign is characteristic of a wider medico-commercial discourse particularly as it is deployed in the USA, where private medicine and private medical insurance are the norm and the hegemonic cultural expectation.23 Memorial Sloan-Kettering Cancer Center is one of the most established and largest private cancer hospitals in the world. It is considered (and presents itself as) the leading center of excellence in cancer research and treatment and has considerable popular as well as clinical and scientific cultural cachet as offering top of the line in cancer services. As a brand, Memorial Sloan-Kettering carries a superordinate capital as a source of cancer expertise, clinical and research authority, and particular effectiveness in a clinical field in which survival is typically characterized in terms of heroic struggle or war (though a war that is not necessarily going to be won).24 The sequence for this advertisement includes 6 separate images (of which 5 feature women, and of which 5 present first person subjects who are white). All of the adverts share a compositionally identical presentation (see Figure 8.3), with comparable, defiant “I stood up to cancer” messages addressed in writing to cancer itself: Cancer, My hair has grown back. YOU haven’t. Sarah Cancer, You said I’d never have children. My daughter says you’re wrong. Michelle and Maddie To: Cancer. From: Barbara. Your occupation in my body has been officially terminated. Effective Immediately. Sincerely, Barbara Cancer, NICE TRY. Sincerely, Larry Rawson Hey Brain Tumor, We are so over. Colleen In its framing of cancer as antagonist, the campaign recapitulates a central trope of the cancer imaginary. However, there is a pointed shift in the ways in which that trope articulates with the cancer patient as assertive protagonist. This is a transvalued cancer imaginary, focused on (and transformed by) the ordinary person as cancer fighter. In this transaction, cancer’s virulence is taken down a peg: a petty thief, a bad worker, a bad boyfriend. The framing referent is an aspirational return to normal, a twin fantasy that first proposes that once you are done with cancer treatment, you are done with cancer; you are back to your proper life—not only the life that cancer interrupted, but indeed the life you were meant

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to have. At the same time, the visualized return is told in domestic normativities. In the stories of “Barbara,” “Rebecca,” “Larry,” “Sarah,” “Colleen,” and “Michelle,” there is an oscillation between the grand and the domesticated. Similarly, each tableau frames a quid pro quo, a social contract in which will (what one is prepared to do, intends or chooses to do) is the currency of exchange, rather than (and standing in for) what one is prepared to (or able to) pay. This contract is spelled out in the narrative arc of the biographies, by which we learn of the chosen journey from cancer to health, intermediated by Memorial SloanKettering’s superordinate expertise, profoundly underscored, as emphasized in firstname references, by its investment in persons. There is also the tension of the compositional and the real that infuses this campaign (and the others like it) with a mode of moral standing that is at once a posture (we are accustomed to the actoras-real-person in advertising) and yet at the same time unassailable because it is constituted as both a banner of, and a shield for, what might in fact be a real, and therefore vulnerable, person: the staged “Colleen” may actually be Colleen.

The edifying I: genre, text, and trope As we can see from Figure 8.2, the advertisement compositionally foregrounds “Barbara,”25 a cancer “survivor,” in a dual first person address both “to cancer” and to the reader, by means of a typed memorandum. Also in the foreground is the all-caps, rather stunningly obtuse primary tag line: CANCER. WHERE YOU’RE TREATED FIRST CAN MAKE ALL THE DIFFERENCE. The name and logo of Memorial Sloan-Kettering Cancer Center appears below the tag line, in small font next to a brief biographical narrative that presents the “cancer-free” “Barbara” as both fait accompli and authoritative referent (as well as referee) for Memorial Sloan-Kettering’s cancer services. More subtle is the framing of “Barbara” as referent for a preferred cancer affect, a cancer cultural imperative defined by a stance of self-assertion, clinical certainty, and endsguaranteed-by-means. On first impression of the ad, a number of buzz words and phrases, including a dominant trope of cancer survivorship, stand out. These include “aggressive” (cancer), “frightened but determined” (“Barbara”), “better outcomes,” “depth of experience and expertise . . . the latest, most advanced therapies” (Memorial Sloan-Kettering cancer services), and “quickly defeated the cancer.” The note displayed by “Barbara,” face front to camera, is a peremptory memorandum. It is addressed to cancer as a personification and is written in a familiar managerialist idiom of the office. It offers a callously brief termination notice. Underlying this visual pun (which operates at multiple levels) is a notion of deserved brutality that accrues as much to the (putatively failed) worker who deserves nothing better than to be sent packing as it does to (the malignancy of) cancer. The visual composure positions “Barbara” as a point of identification in

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Figure 8.2 “From Barbara” Source: http://digobrands.com/memorial-sloan-kettering-cancer-center/

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(a)

(b)

(c)

(d)

(e)

(f)

Figure 8.3 Memorial Sloan-Kettering Cancer Center advertising campaign Source: http://digobrands.com/memorial-sloan-kettering-cancer-center/

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an alignment with managerialism itself—indeed with its most brutal and aggressive variant. In psychoanalytic terms, there is splitting26 at a number of levels. The allusion to an inadequate co-worker or subordinate domesticates the existential crisis of cancer. Cancer treatment, framed as a firm directive, diffuses its gruelling rigors and dangers. This staging of “Barbara’s” moral/professional rightness suggests an underlying proposition that she does not (we do not) deserve to have cancer, that cancer is an injustice, and that a contract, in which “Barbara”/we should live cancer-free, has been violated. Cancer is a wrong that implies an entitlement (and power) to set right. Likewise, “beating cancer” is a reciprocal metaphor of personal vindication and a corrective through which one might claim one’s “true” standing. The details of visual composure are also significant. By her dress, personal style, and pose, “Barbara” is styled as a professional, but one in a feminized occupation. She wears an attractive buttoned-up blouse (but not a suit); she is groomed but not trendy, mature without being matronly, serious but without the graphic signifiers of upper (or perhaps even middle) management. Her costume evokes possibly a bank worker or mortgage advisor (rather than a hedge fund manager), a paralegal (rather than a lawyer or judge). She fits a trope of “working woman”: she presents as educated, she works in a professional (though not particularly well paid) sector, she may be single (she does not have a wedding ring); she bears the modest trappings of middle-class success without any suggestion of affluence. This impression of “Barbara” is cemented by the memorandum—something that someone in a comparable position to “Barbara” might imaginably receive or type up (the memorandum in and of itself strongly evokes the feminized occupational roles of secretary or office manager), but would not otherwise have the status to issue. The class inflections that frame “Barbara” emerge from and are cemented through the narrative logic of the ad’s turn-the-tables dénouement—“Barbara’s” memo signals a vindicating power reversal in which object and subject switch places—she who would receive a termination notice, will now issue it. The lifeand-death terrain of cancer adds both freight and weight to the otherwise unsubtle double entendre of “termination” and its simple reversal. In the period of its circulation, this imagery may have carried particular resonance as many people like “Barbara,” in the midst of recession, might have been receiving termination notices or lived in any case with the normative impermanence of such positions. By any interpretation, however, “Barbara,” like the other figures in this campaign, signifies an “ordinary” working person. That she is presented as a normative (even “preferred”) patient for Memorial Sloan-Kettering carries an implication of egalitarianism: this, the “best of hospitals,” is not only or ideally for the affluent. This speaks directly to the anxieties of a culture in which extreme inequities of healthcare are the norm. The notion that someone like “Barbara” could not only access a gold standard hospital like Memorial Sloan-Kettering, but represents their regular and indeed sought after pool of patients, is a powerful draw. The particular interlocking of gender, race, and class in the imagery of “Barbara” is complexly intertwined with the array of figurations in this series. She appears on the one hand as a lone black figure in an array of white figures. At the same

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time, she is presented as one of a diverse series of “ordinary patient” tropes (older, younger, single, married, male, female, black, white). Together these images crosscut gender and race (though less obviously class, since all are on a middle-class spectrum). This fills out an underlying implication in the array, which suggests, “cancer doesn’t discriminate; and neither do we.” This is a sensibility I have found in other cancer imagery and not limited to the USA. It is, for example, the explicit tag line (“for women like me”) of the television advertisement for Well Woman cancer insurance offered in the UK, with its interchanging multi-ethnic spokeswomen, and of the pink ribbon campaigns in a number of national contexts. “Barbara’s” facial expression is complexly evocative. She is not, as the textual cliché in the advertisement describes, “frightened but determined.” She appears instead determined, fierce, superordinately entitled. On her face and in her pose is an unyielding determination. Her eyes, frontally direct to the reader, evoke a transitive adversarial transaction against that which—or who would—obstruct or impede or threaten. Her expression is firm, implacable. Juxtaposed with the text and particularly with the memo, there is an implication that “Barbara” is the one who is in control, that we are witness to the results of her agency. There is a subtle air of triumphalism in her pose and expression, an implacability, a suggestion of unwillingness to compromise in any way with a powerful enemy whose power cannot be acknowledged—nothing but unconditional victory will suffice. Even though, in fact, cancer patients can and do “lose,” as the advertisement text itself euphemistically acknowledges in “Barbara’s” bio: “she chose Sloan-Kettering Cancer Center where patients often have better outcomes than those treated at other hospitals.”27 “Barbara’s” expression, along with the notion that “she chose,” also signifies a kind of transferred agency. The medical personnel who treated her and the regimens of her treatment are not mentioned. While the advertisement is for Memorial Sloan-Kettering cancer services, the imagery elides and transfers this agency to “Barbara,” the patient who chooses. It also posits a bargain for survival located primarily on the terrain of morality. There is here a kind of quid pro quo, which suggests that the unequivocal and insistent insertion of oneself into “the cutting edge of treatment” (“Barbara’s” choice) will pay off in a moral entitlement (as opposed to a probable outcome) to be “cancer-free” (“Barbara’s” affective pose). Judith Butler (2004) has argued the representational currency of the face to convey (or repudiate) humanity and grievability. In the context of cancer, the focus on “Barbara’s” face ostensibly does this. But it also does something else. In its pose of implacability, it also refuses humanity in a denial of the possibility of death and loss. It is, in this sense, the obverse of the Levinasian face (1985): it is all form. Its vulnerability is spectral, forgotten.28 Certainly it leaves estranged the grievable humanity of the cancer patient who is not “at war” with cancer, who would not issue brutal memoranda of dismissal, who would not view cancer as a nefarious personification, separate from herself, or who cannot (or will not) fulfil the imperatives of action and affect that make up cancer’s requisite “bargain for survival.”29

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Exhortations (the “exhortative you”) As emblematized in the “From Barbara” exemplar, the Memorial Sloan-Kettering campaign both forges and relies on a particular kind of bioethic that is constituted through exhortation to the reader—an issuing of imperatives of affect and action that constitute a social contract of witness (in this instance to “Barbara’s” situation and choices). There is, first, an imperative “will to live.” That is, we are presented with both a presumptive obligation and imperative to “choose to live,” to be unwilling to compromise, that nothing else can possibly be accepted. There is no room for a choice to refuse treatment, or to doubt the efficacy or desirability of the “cutting edge” of treatment.30 There is an implicit immorality and, perhaps more than that, a morally infused unimaginability that one might not “choose life” or want life. Second, and accruing to this first imperative (to will to live), is a corollary imperative to invest and, indeed, to invest aggressively but at the same time without need for details or particular understanding, in the normotic phantasy31 of expertise and control vis-à-vis “cutting edge” therapies. In fact, the “latest” and “most advanced” therapies in the cancer field are frequently the most untested and most likely damaging to the patient, with neither their effectiveness nor their safety having had time to be established. Even where this is not the case, cancer treatment is inescapably damaging, if not devastating to the body.32 Rhetorically, however, “cutting edge treatment” carries a very different set of connotations—a twin projective investment, on the one hand, in the power of medical science and, on the other hand, in subjective entitlement to a particular outcome as a (just) reward for one’s willing, even insistent, submission to it. Both are faith-based transactions33 built on a normative mode of believing in, as distinct from believing. In this instance, faith in treatment is presented as a peculiar kind of wager. The willingness to undergo treatment’s “cutting edge” takes on a talismanic power. What it promises to confer is not so much “freedom from cancer” as it does moral standing, a certain brand of cultural entitlement and recognition as an edifying subject. Standing is the primary bargain. Symbolically it is, and also stands in for, the “better outcome.” The simple fact, however, is that nothing can guarantee a cancer-free life.

Rational agency The Memorial Sloan-Kettering campaign carries strong allusive references to rational agency. “Barbara’s” story and her pose both invoke and disingenuously deny the question of choice, not only at a personal level (what one may choose for oneself), but also in terms of the larger social realities that dictate whether and to what extent one is in a position to choose. In the logic of the ad, “Barbara” chooses. Her path and her outcome are presented as questions of (her) personal rational agency. The primary terrain of her choice is her own (responsible, strong, possibly informed) character. It is implied but not acknowledged that “Barbara” has the means—the human, social, and economic capital—to make such a choice. It is worth noting that the Sloan-Kettering advertisement campaign both pre-dated

164 Deborah Lynn Steinberg and post-dated “Obamacare” legislation in the USA ostensibly aimed to universalize rights and obligations to health insurance.34 There is an assumption that it is only “Barbara’s” intent (as opposed to the state of her health insurance, the terms of her employment contract, her geographical location, her personal means, her familial responsibilities, or the decision of Sloan-Kettering itself to accept her as a patient or not, just to name a few) that determines whether or not she can be treated at her choice of hospital.

Competition and medico-commerce Where you’re treated first can make all the difference. The immediate national/social context for the Sloan-Kettering campaign is defined by a presumption that medicine is an arena legitimately characterized by corporate management, marketization, and competition.35 The notion that “where you are treated first can make all the difference” cannot but have a disquieting (if probably unintended) subtext in a society and a healthcare context riven by extremes of inequality. It entirely negates the question of why “you” shouldn’t be able to count on quality healthcare wherever you are treated. The conceit that attaches to “Barbara’s” choice is the fallacy of the “discerning” patient in a context of corporatized medical care. It is a fallacy that operates at two levels. First, it reconstitutes the patient with “better outcomes” in terms resembling connoisseurship. There is a connotation of class distinction that implicitly attaches to the discerning consumer. Thus, while “Barbara’s” persona evokes liberal egalitarianism, this is belied by her (ability to have) discriminating “taste” in hospitals. The second fallacy is that personal choice not only can and always does trump social context and social position, but that that it ultimately trumps mortality.

Phantasmatics The persuasive power of the Memorial Sloan-Kettering campaign is in part forged through powerful meta-level cultural fantasies,36 all of which constitute phantasies of action (that is the phantasy of the restoration of self-agency against the threat of loss).37 First is the fantasy of turn-the-tables justice and vindication in which the “little guy” in a low-ranking and unappreciated job gets to (finally) call the shots (she who can terminate, rather than be terminated). This is elaborated through a further fantasy of capital—of having the means to make the choice of the gold standard, and of having human capital—to be she who recognizes the gold standard choice. Underlying both is a normotic phantasy constituted by a resolute and positivistic investment in the power of science and expertise and, in so doing, in the phantasy that all can be known and controlled. It is in this context that treatment takes on its totemic status—an object of faith, rather than a brutal reality with an equivocal and insecure, at best, relationship to survival.

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Powerful in this context too is a narcissistic phantasy of having elevated moral capital and standing: to be the edifying I, she who can exhort rather than be exhorted, who can be the subject of phantasmatic identification, admiration, and aspiration— here it is both cancer and one’s particular pose in the face of cancer, combined— that produce the self as not only important, but of elevated importance. It is a romantic fantasy, the imprimatur of noble battle, which adduces consolation in heroism and pathos. This is a potent appeal, a promise of redemption and of rescue from personal or social marginality, of spiritual compensation for the radical uncertainties and brutal physical exigencies that can attend the experience of cancer. This transvalued cancer patient would seem to be the antithesis of the repudiated subject described by Sontag in Illness as Metaphor. This is a construction of the cancer patient, not as a figure of pathos or cultural revulsion, but as edifying ideal: indefatigable and with an implacably affirmative investment in the normative social relations and exigencies of medico-commercial institutionalities. As a female figuration, moreover, the self-assertion modelled in “Barbara” has an additional seductive and connotative capital—as a figure of justice, a “feminist” idealization of self-agency, admiration, and vindication.

I estranged The Memorial Sloan-Kettering campaign elucidates some of the most powerful phantasmatic projections in the current popular culture of cancer, one in which the popular and clinical imperatives of cancer patienthood collide, and that are suggestive of the underlying social contract of late neoliberalism. The repertoires in play in the Sloan-Kettering example suggest deeper values at stake: values of self-assertion, repudiation, and distanciation lived out simultaneously as preferred moralities. Perhaps most poignant of these is the imperative estrangement that epitomizes all three. This imperative estrangement is perhaps most powerfully articulated as the denial of loss. Drawing on Johnson’s (1999) understanding of mourning and loss,38 I would suggest that the Sloan-Kettering campaign articulates a standpoint of melancholia—a refusal to mourn, a repudiation of loss and death, an insistence that we can choose to live, that life can be willed. It is in this context that the often extreme rigors of cancer treatment can be re-construed as a sacrificial bargain through which one earns (back) life. Affective awareness of the tentativity of this promise is pointedly refused—in “Barbara’s” figuration, a termination notice that brooks no ambiguity or wasted words. Embedded in this denial of loss is the repudiation of the body—the impossibility of seeing one’s cancer as oneself, and the necessity of understanding the exercise of self-destruction (cancer treatment involves some of the most destructive things, short of death, that one can do to a human body) as a signifier only of self-recuperation. A second imperative estrangement lies in the phantasmatics of transferred agency. The exemplary patient presents, on the one hand, in the first person a selfasserting “I,” and yet at the same time cathects this agency (in which there is no imagined dissent, discomfort, resistance, refusal), in a resolute turning over

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of herself to clinical protocols and expertise. There is no requirement or expectation for her to research or understand these protocols. In this cultural imaginary, the exemplary patient—like the exemplary citizen—asserts, chooses, and desires, but only within the bounds of normotic governmentality: this is a citizenship solely defined by the will to consent. A third imperative of estrangement is temporal. Jain (2007) has described one aspect of this in her discussion of “living in prognosis” as the radical and requisite displacement of oneself from one’s own life. Life in prognosis is contingent life, a limbo in which one must wait for an “all clear” from without, to return to one’s self, return to living. There is a corollary order of temporal estrangement, what I would term the requirement of deferral, in which one repudiates the now in exchange for later, exchanges the habitation in one’s present life for a phantasmatic futurity. In this deferred space, the brutality of a now in treatment is transmogrified by a promise of future life. Indeed, phantasmatic futurity provides the rationale for present brutality. We see this in the framed standpoint of “Barbara”—who issues brutalities as a moral entitlement that accrues precisely from her standing as a survivor, and who stands in for survival itself, where survival is what is later. In its transvalued variant, cancer is understood to obviate life now, to set in motion an imperative of disassociation in order to buy time. What is lost in this transaction is a fundamental reality of life—life is only now. Futurity is always notional. Imperative estrangement in the wake of cancer also disallows consideration of the quality of now. There is no place in this imaginary, for example, for the choice of a treatment-free now that will be short—as distinct from a treatmentbound now that may be unbearable, done for the sake of more time, and that may be (or in some cases will almost certainly be) short anyway. There is no room for the acknowledgement that life in prognosis is also a form of now.

Conclusion Lévinas might say: the main condition of care is an orientation, sensitivity, and accountability to and for the face of the other. (Blum 2017, p. 2, this volume) I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action. (Jolie 2013) I would like to conclude this chapter with three emergent themes that constitute the imperative field of cancer—of which the Memorial Sloan-Kettering campaign is particularly evocative and that also links it, powerfully, subliminally, to the Jolie exemplar that began this chapter. First is the strikingly neoliberal body-reflexive39

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ethic that infuses the representational field of cancer. This is constituted through repertoires of body-affective imperatives that are ruthlessly estranging and in which self-assertion is phantasmatically secured through its obverse—subjection, transferred agency, denial, distanciation. As Bell (2012) and others (Stacey 1997; Klawiter 2008; Ehrenreich 2009) have suggested, it is powerfully evident that the cancer patient is no longer a metaphor of hopelessness, or corruption, or tragedy or shame. And yet, the terms of her transvalued capital seem no less disturbing: the cancer patient as indefatigable. She works, she asserts, she chooses, she speaks in the declarative. The social conditions of her life, even the biological conditions of her life, are not consequential, or not as consequential, as her personal determination and will. Her life models ours. And ours, as a logical corollary, are obliged to model hers. This is the quintessential neoliberal subject. And it is also the logic, and moral closure, and occasional unease that greeted Angelina Jolie’s aggressive mode of action, juxtaposed with the softly measured tone of her disclosure, as she presented at one and the same time as a powerful public figure and also a vulnerable person. In this context, both constituted a particular kind of moral capital, a moral capital that made it crass and insensitive to introduce doubt or uncertainty about her understanding of genetics, or the extremity of her decision, or even the terms of her reception as “brave.” Much as it might seem crass to critique the framing of the staged “Barbara,” because there might be an actual—“she” might actually be—Barbara. Arising from this is a second theme, the idealized subject position of the exemplary patient. She is foremost a public body, subject of and subject to the imperative expectations of the wider culture. As potently evinced in the tropes of popular culture, hers is a subject life interpellated40 into particular duties of affect and action: duties of self-care, defined primarily or only by the exigencies of treatment, and duties of feeling that are implacably affirmative and ruthlessly oriented to the future. In this context, the social contract that offers moral standing as a stand-in for, and a talisman of, survival, becomes an inspirational example and a transferable public duty. The assertion of this subject doubly crowds out her obverse—the bad patient, she who might not be interested in (or able to) march forward, who might not be invested in life at any cost, or perhaps even at all, she who is “not brave”—and indeed, what does a “not brave” cancer patient look like? One might suggest, in this context, that “Barbara” and Jolie constitute mutually reinforcing brave faces. The medical choices of Jolie, and the terms of her disclosure as well as its public reception, play out on (even as they are overdetermined by) “Barbara’s” terrain. Jolie’s capital both leverages and is leveraged by the twin bargain for standing as survival emblematized and embodied in the example of “Barbara.” Both “Barbara” and Jolie are cast as elevated figures, ego ideals of “bravery,” points of transference and transcendence. The powerful, phantasmatic resonance of this/their survivorship trope in turn makes plausible the pervasive interpretation of Jolie as one who has famously and pre-eminently battled (and survived) cancer, even though Jolie did not have cancer. It has constituted the terms of plausibility that extend cancer’s discursive reach into the pre-diagnostic,

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transposing its imperatives of survival into “pre-vival.” Aranowitz (2009) has noted a progressive convergence of risk of disease with disease itself. Jolie’s case both exemplifies and also significantly leverages the persuasion of this convergence. One of the effects of this leverage is both cultural persuasion and a widening interpretive field not only of risk and immanent patienthood, but also of its terms of estrangement. And it is this context, as Jain (2007) has suggested, that “living in prognosis” can become universalized—a default, a litmus test, an expectation, a normative status. This is the critical place of phantasmatic projection. It is, in part, in and through such projections that the representational relations of the cancer culture become reciprocally anchored into its material relations. The melancholic interstices of “bravery,” the hushed allusions to who has “failed” (see, for example, Bach 2014), the modes of experience or affective stance (suffering, anger, resistance) that have no place in cancer’s popular imaginary, constitute an imperative-interpretive field infusing the terms of “survivorship” and “better outcomes” such that they can be so ambiguous, so painfully equivocal, and yet in the end, so definitively invoked. In the end, the idea that defiance and will are what produces outcomes—whether that is survivorship for individuals or the oddly evacuated notion of “beat[ing] cancer sooner” as the current (2015) Cancer Research UK campaign would suggest—is seductive. It invests a stringently particular imaginary of cancer with moral capital and social recognition: the cancer patient as culture warrior becomes a deserving life. That these ideas can stand in for (and produce) “survival” is a powerful lure and an extraordinary sham. They normalize a callous set of social values—that repudiate pain, ignore reality, deny death, and reject the “failed.” The cancer warrior as cultural symbol is, I would suggest, the duplicitous “brave face” of cruel times.

Notes 1 A different version of this chapter was published in 2015 as “The Bad Patient: Estranged Subjects of the Cancer Culture,” Body and Society 21(3): 115–43. 2 Two weeks following the publication of Jolie’s article, her maternal Aunt, Debbie Martin, died of breast cancer at the age of 61, reportedly having also been diagnosed with BRCA 1, but “too late.” Martin had been originally diagnosed with cancer in 2004 (Associated Press 2013). 3 Unfortunately, Jolie could still go on to have breast cancer, notwithstanding having had a double mastectomy. 4 It is beyond the scope of this chapter to undertake a close analysis of the problematic conflation of genetic risk statistics, which refer to “objective distribution in populations” and individual risk (Konnikova 2013). It is important to note that the genetic risk assessment is not, as it has been cited in this context, a mode of prognosis, nor a zerosum proposition. Understandings of genetic markers continue to be contested and uncertain, even in the context of single gene “flaws” (see, for example, Spector 2012). 5 Jolie’s case represents the wider genetification of risk. See for example Lemke 2003 and 2004 (on genetic diagnostic imperialism); Gibbon 2007; Steinberg 2013, 2015. 6 A Google search of this association (Jolie, “the most beautiful woman in the world,” mastectomy) brought up nearly 3 million references.

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7 Jolie wrote: It is reassuring that [my children] see nothing that makes them uncomfortable. They can see my small scars and that’s it. Everything else is just Mommy, the same as she always was. And they know that I love them and will do anything to be with them as long as I can. On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity. (2013; my emphasis) 8 Jolie’s second article was written from a far less certain and edifying standpoint, in part, as she acknowledged, because this second surgery promised to be far less normatively restorative than her breast reconstruction—she would inevitably undergo a sudden and difficult menopause. This second article also explicitly acknowledged the difficult terrain of choice accruing to family histories of breast and ovarian cancer and to a BRCA mutation diagnosis. 9 Jolie noted the prohibitive costs of BRCA mutation testing in her article, and this issue and Jolie herself became explicit reference points in the Supreme Court decision to invalidate the patenting of “natural genetic material,” including the BRCA genes. While the Court’s decision opened up a competitive market in BRCA (and other) gene testing, this did not of course address the considerable ambiguities surrounding the relationship between genetics and cancer, or between genes and disease more broadly. 10 Jolie characteristically appears either or both as textual referent and as a photographic sidebar. See, for example, the reference to an “Angelina Jolie Effect” (Nicholson 2013); to an “Angelina Jolie Gene” (see Figure 8.1); and to Jolie-framed dilemmas (Leung 2013; Jeffries 2014). 11 There is a certain irony in the continued framing of mammography as stock referent for any and all cancer reportage even as the mammogram’s paradigmatic place in cancer prevention has been radically ruptured (see, for example, Grady 2015). 12 I have discussed this constellation of strategies at length elsewhere. See, for example, Steinberg 2009; Epstein and Steinberg 2003; 2007; 2011. 13 This approach can be distinguished from more quantitatively styled content-focused studies that aim to map patterns of representation (see, for example, Haran et al. 2008; Boden et al. 2008). While the latter approach primarily aims to make empiricalobservational (truth) claims about signification, the former is primarily focused on the qualitative and inferentially framed question of “truth regimes.” 14 For more elaborated discussion (and interpretation) of this idea in relation to modes of visual representation, see also Butler 1993b and Steinberg 2009. 15 These studies have been particularly concerned with the pink ribbon-led charity movement and its role in constituting a pernicious mode of gendered corporatized culture surrounding breast cancer. 16 I also followed a number of cancer-related televisual campaigns with particular focus on the Canadian HPV vaccine series; televisual Run for the Cure campaigns in both Canada (Princess Margaret) and the UK (Tesco); and two British private health insurance campaigns focusing on cancer from BUPA and Well Woman Cancer Insurance. 17 Four of the print advertisement campaigns I collected appeared in multiple versions and this characterized nearly all of the television campaigns I followed. 18 While the questions of medical consumerism and marketization per se are not the focus of this chapter, it is important nevertheless to note that they comprise a significant dimension of context for a semiotic analysis of cancer advertising and have informed key strands of the cancer culture literature. Medical and marketization are key considerations of the literature on cancer pinkification and the cancer charity movement (e.g., King 2006). See also Sulik and Eich-Krohm 2008; Sulik 2013.

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19 While it is beyond the scope of this chapter to explore this in more depth, it is important to note that digital media has exponentially expanded the mediatized dimensions of the wider cancer culture. Not only does this enable previously localized advertising to be internationalized (most of the print advertisements and many of the television advertisements I have followed are available in the digital versions) but also the particular tropes and repertoires of their composure. Thus, for example, some UK charity advertisements deploy distinctively Americanized vernaculars of self-assertion (“I choose,” “kick butt,” and so on). 20 It might also be argued that, embedded in the progressivist and democratic slant of both the New York Times and the range of magazines in this selection, there is also a strand of what might be described as a social progressive neoliberal ethos, which like its more conservative or reactionary variants emphasizes initiative, self-assertion, and assertive citizenship enacted through consumption and consent. Certainly, as this chapter goes on to argue, these are the paradoxical values embedded in the Memorial Sloan-Kettering advertising campaign. 21 It was this advertisement in particular that motivated me to begin attending to the media culture of cancer. 22 The examples collected for this chapter ran between 2009–13. 23 It is beyond the scope of this discussion to elaborate on this point. But it is worth noting that medico-commercial discourse is a distinctively marginal arena of advertising and of wider popular commonsense in the UK. While the coalition government of the moment is aggressively moving to privatize the National Health Service, it remains the case that healthcare is free at the point of service and (as distinct from the provincial health care system in Canada) includes subsidized prescriptions, thus obviating the need for supplemental private insurance to cover outpatient drug treatments. While advertising for cosmetic surgical treatments (mostly in lifestyle magazines), medical charities, private hospitals, and private health insurance is to be found, it is not pervasive and there is no culture of advertising for prescription pharmaceuticals (which is illegal in the UK). Nor is medical care generally presented through tropes of commerciality or competition or individualized/personal financial obligation. 24 Daniel Menaker (2011) elaborates on this point, referencing also a range of critical literature (Sontag and Ehrenreich, for example) that considers the consequences of such representations for patients and for the culture more widely. 25 Throughout I will refer to “Barbara,” where it is clear I am examining a figuration. 26 Splitting, in object relations theory, refers to the simultaneous processes of idealization and repudiation as defences against anxiety and crisis (Klein 1975). 27 The phrase “patients often have better outcomes” is all but meaningless. Any hospital could make the same claim. The phrase backhandedly acknowledges that patients also have “worse” outcomes, while disclaiming that association with Memorial SloanKettering—even though logically, if the first proposition could be claimed, so could its obverse. 28 With thanks to Stuart J. Murray (personal conversation) for this point. A relevant point is made by Bell 2012, who considers the emergent languages of “teachable moments” and “post-traumatic growth” in popular cancer discourse. I would suggest that these too function as languages of imperative that at once reconstitute the moral capital of the “survivor” as against her (our) entitled exhortation to the “you.” 29 There are two elements of denial here. First is the human condition that cannot guarantee survival (whether from cancer or anything else), and that cannot evade death, whether that is in the long or short run. And second is an affirmative choice not to pursue heroic measures. Both, in this instantiation, are cast outside the imaginable moral hermeneutics of cancer. 30 Indeed, there is no room to consider that the choice to treat at all will involve devastating trade-offs with respect to quality of life, and there is no guarantee that that the return on that trade-off will be life at all, let alone a “return to normality.”

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31 My use of the term derives from Bollas’s (1987) discussion of “normotic” in the psychoanalytic context. “Normotic illness,” as Bollas describes, constitutes the transformation of the self into an ideal object, a virtual automaton of “normality,” totalizingly invested in facts, utility, knowability, and rational control. Taken as a cultural description, a “normotic phantasy” might describe the invested repudiation of what is subjective (feeling, the body) in favor of an idealized ultimate rationality. As such, it can be suggested that normotic phantasy underpins and constitutes the cultural “unconscious” of modernity and scientific positivism, with their principled idealization of rational utilitarianism, scientific objectivity (the repudiation of feeling and body), and the overdetermined efficacy of science and the law. 32 Cancer treatments characteristically involve surgery (which may be disfiguring), chemotherapy, and radiation. The rigors of treatment are detailed in patient information sites. See, for example, www.macmillan.org; www.cancer.org. 33 Sam Harris (2005) discusses faith-based epistemic transactions in the context of terror and formal religious affiliation. I would suggest however that faith epistemology describes the imperative “feeling-knowledge” standpoint of the “edifying” or “exemplary” patient. There is, in other words, a distinction to be made between believing something in the evidentiary sense and believing in something—a hauntological proposition that is always already in defiance of evidence. 34 Health insurance remains far from universal in the USA. And health coverage for the insured in the face of illness remains precarious. Nevertheless, the new legislation, as it comes into force, does prevent insurance companies from refusing to issue policies to those with pre-existing medical conditions. 35 The commercialized discourse of cancer emblematized in this Sloan-Kettering campaign bespeaks a wider medical-corporate complex. For extended discussion of the political economy of breast cancer and its relationship to wider issues in corporate medicine, see particularly Kasper and Ferguson 2000. 36 I am distinguishing “fantasy” (conscious formulations of desire) from phantasy (the underlying unconscious investments at stake in conscious fantasy). 37 The phantasy of action, in Freudian terms, is the defence against castration. 38 See, for example, Klein (1975), Kristeva (1992), and Johnson (1999) for elaborated discussions of mourning (not mourning) and melancholia. 39 I extrapolate here from R.W. Connell’s (1995) understanding of masculinities as constituted through iterative, “body reflexive” practices. 40 “Interpellation” refers to the ways in which we are, on the one hand, inserted into discourse (regimes of meaning and practice) and, on the other, insert ourselves into discourse.

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Kasper, Anne S. and Susan J. Ferguson (Eds.). 2000. Breast Cancer: Society Shapes an Epidemic. New York: Palgrave Macmillan. Kear, Adrian. 1999. “Diana Between Two Deaths: Spectral Ethics and the Time of Mourning.” In Mourning Diana: Nation, Culture and the Performance of Grief, edited by D.L. Steinberg A. Kear, 169–86. London: Routledge. Kilbourne, Jean. 1999. “The More you Subtract, the More you Add: Cutting Girls Down to Size.” Deadly Persuasion: Why Women and Girls Must Fight the Addictive Power of Advertising. New York: The Free Press. Accessed April 16, 2016. www.aef.com/industry/ news/data/hot_issues/1361. King, Samantha. 2006. Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy. Minnesota, MN: University of Minnesota Press. Klawiter, Maren. 2008. The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism. Minnesota, MN: University of Minnesota Press. Klein, Melanie. 1975. Love, Guilt and Reparation and Other Works 1921–1945. London. Hogarth Press. Konnikova, Maria. 2013. “Angelina Jolie, Meet Nate Silver.” Salon.com, May 15. Accessed May 15, 2013. www.salon.com/2013/05/15/angelina_jolie_meet_nate_silver/. Kristeva, Julia. 1992. Black Sun: Depression and Melancholia. New York: Columbia University Press Lemke, Thomas. 2003. “Risk as Responsibility—Genetic Diagnosis, Moral Obligations and Consumer Choices.” Paper presented at the Vital Politics conference, London School of Economics and Political Science, London, UK, September 5–7. Accessed September 15, 2014. www.thomaslemkeweb.de/engl.%20texte/Risk%20as%20Responsibility%20III.pdf. —— . 2004. “Disposition and Determinism—Genetic Diagnostics in Risk Society.” The Sociological Review 52: 550–66. Accessed September 15, 2014. www.thomaslemkeweb. de/engl.%20texte/Disposition.pdf. Leopold, Ellen.1999. A Darker Ribbon: Breast Cancer, Women and their Doctors in the Twentieth Century. Boston, MA: Beacon Press Leung, Wency. 2013. “Will Angelina Jolie’s Mastectomy Inspire other Women to Follow her Lead?” The Globe and Mail, May 14. Accessed May 15, 2013. www.theglobeand mail.com/life/the-hot-button/will-angelina-jolies-mastectomy-inspire-other-women-tofollow-her-lead/article11911243/. Lévinas, Emmanuel. 1985. Ethics and Infinity. Pittsburgh, MA: Duquesne University Press. Mamo, Laura and Jennifer Ruth Fosket. 2009. “Scripting the Body: Pharmaceuticals and the (Re)Making of Menstruation.” Signs 34(4): 925–49. Menaker, Daniel. 2011. “Cancer: Fighting Words.” The New York Times, August 27. www.nytimes.com/2011/08/28/opinion/sunday/cancer-fighting-words.html?_r=0. Mort, Frank. 1987. Dangerous Sexualities: Medico-Moral Politics in England Since 1830. London: Routledge & Kegan Paul. —— . 1996. Cultures of Consumption: Masculinities and Social Space in Late TwentiethCentury Britain. London: Psychology Press. Nadesan, Majia Holmer. 2008. Governmentality, Biopower and Everyday Life. New York: Routledge. Nicholson, Christie. 2013. “ ‘Angelina Jolie Effect’ Leaves Public with Inaccurate Knowledge of Breast Cancer Risk.” Scientific American, December 27. Accessed December 27, 2013. www.scientificamerican.com/podcast/episode/angelina-joile-effectleaves-public-13-12-27/.

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Nixon, Sean. 1996. Hard Looks: Masculinities, Spectatorship and Contemporary Consumption. London: Palgrave Macmillan. Rabin, Roni Caryn. 2013. “No Easy Choices on Breast Reconstruction.” The New York Times Well Blog, May 20. Accessed May 20, 2013. http://well.blogs.nytimes.com/2013/ 05/20/no-easy-choices-on-breast-reconstruction/. Shute, Nancy, 2013. “Angelina Jolie and the Rise of Preventive Mastectomies.” NPR.org, May 14. Accessed May 15, 2013. www.npr.org/blogs/health/2013/05/14/183892507/ angelina-jolie-and-the-rise-of-preventive-3q2mastectomies. Sontag, Susan. 1990 [1978]. Illness as Metaphor and AIDS and its Metaphors. New York: Penguin. Spector, Tim. 2012. Identically Different: Why you Can Change your Genes. London: Phoenix. Stacey, Jackie. 1997. Teratologies: A Cultural Study of Cancer. London: Routledge. Steinberg, Deborah Lynn. 2009. “Seeking the Jew’s Gene: Science, Spectacle and the Ethnic Other.” MediaTropes 2(1): 1–23. Accessed September 15, 2014. www.mediatropes.com/ index.php/Mediatropes/article/view/15762/12857. —— . 2013. “An Open Letter to Lindy West.” http://darkcloudblog.wordpress.com/2013/07/ 21/an-open-letter-to-lindy-west/. Accessed September 15, 2014. —— . 2015. Genes and the Bioimaginary: Science, Spectacle, Culture. Farnham: Ashgate. Sulik, Gayle A. 2011. Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health. Oxford: Oxford University Press. —— . 2013. “What Cancer Survivorship Means.” American Medical Association Journal of Ethics 15(8): 697–703. Sulik, Gayle A. and Astrid Eich-Krohm. 2008. “No Longer a Patient: The Social Construction of the Medical Consumer.” In Patients, Consumers and Civil Society: Advances in Medical Sociology, Volume 10, edited by Susan M. Chambré and Melinda Goldner, 3–28. Bingley: Emerald Group. Sun, Lena H. 2013. “After Jolie’s Disclosure, Cancer Group Urges Caution.” The Washington Post, May 14. Accessed May 14, 2013. www.washingtonpost.com/national/ health-science/after-jolies-disclosure-cancer-group-urges-caution/2013/05/14/db9f7ed6bcac-11e2-89c9-3be8095fe767_story.html. Usatoday.com. 2013. “Jolie’s Cancer Risk Shared by Others with Genetic Flaw.” USA Today, May 14, 2013. Accessed May 18, 2013. www.usatoday.com/story/news/nation/2013/05/ 14/jolie-breast-cancer-gene/2157649/. Whitelocks, Sadie. 2013. “A Mastectomy at 21, and Implants that ‘Look Better’ than the Real Thing: Why Four Women Chose to have Preventive Breast Cancer Surgery like Angelina.” Daily Mail, May 15. Accessed May 15, 2013. www.dailymail.co.uk/femail/ article-2324362/Angelina-Jolie-mastectomy-Why-4-women-chose-preventive-breastcancer-surgery-like-Angelina.html. Williamson, Judith. 1978. Decoding Advertisements: Ideology and Meaning in Advertising. London: Marion Boyars. Yahoo.net. 2013. “Factbox: Celebrities with Breast Cancer.” Accessed May 15, 2013. http://health.yahoo.net/news/s/nm/factbox-celebrities-with-breast-cancer.

Print advertisements Cancer Research/UK Race for Life/Tesco. “Cancer, We’re Coming to Get You: Run, Walk, Dance, Enter.” Dana-Farber/Brigham and Women’s Cancer Center. New York Times Magazine (two versions).

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—— “Amy.” August 2009. —— “Karen.” September 2009. “Hey Cancer Kiss My Butt.” InStyle Magazine (UK), April 2013. MD Anderson Cancer Center. “Making Cancer History.” —— “Linda.” The Atlantic, November 2011. —— “One Goal: Stop Cancer.” Wall Street Journal, February 2013. Memorial Sloan-Kettering Cancer Center “Where You’re Treated First Can Make All the Difference.” New York Times Magazine (collected between 2009–10 and 2013, six versions). —— “Barbara.” June 2009; March 2010. —— “Colleen.” April 2009; July 2009; April 2010. —— “Larry Ramson.” September 2009; February 2010; September 2010. —— “Michelle and Maddie.” May 2009. —— “Rebecca.” March 2013. —— “Sarah.” May 2009. Mount Sinai. “Another day, Another Breakthrough.” New York Times Magazine (collected between 2009–10, three versions). —— “Assya Bardarov.” 2009. —— “Ryan Wenke.” May 2009. —— “Tom Davis.” April 2010. Leukemia and Lymphoma Society. “Someday is Today.” The New Yorker, March 2013. Novartis. “I’m Here Today because I Never Quit Fighting My Cancer.” The New Republic, April 2010. “Oi, Cancer. You. Me. Outside Now.” Marie Claire (UK), May 2013 PhRMA. “The Country that Put a Man on the Moon Can Cure Cancer.” The New Republic, April 2009; October 2009. St. Jude Children’s Research Hospital. “Deanna vs Brain Tumor: You Can Help Her Win.” Elle Magazine (UK), January 2011. Smilow Cancer Hospital at Yale-New Haven. “It’s Not a Hospital for Cancer, It’s a Hospital for People with Cancer.” New York Times Magazine, April 2010. Susan G. Komen for the Cure/American Airlines. “Giving the Gift of Travel to Benefit Breast Cancer Research.” The New Yorker, November 2009. University of Michigan Health System. “Hail to the Victors Valiant.” New York Times Magazine, 2009. See also University of Michigan Health System Annual Report 2014. Accessed September 15, 2014. www.med.umich.edu/chs/images/CPS percent20FY14 percent20Annual percent20Report percent20FINAL.pdf. US Oncology. “United We Fight: 1,300 Cancer Physicians. One Goal.” NewYork Times Magazine, May 2010. Weizmann Institute of Science. “A Microscopic Cancer Spy: The World Needs Our Research. We Need Your Support.” New York Times Magazine, 2010.

Television advertisements BUPA Health Insurance. 2009. “Feel Better”; “Emma Felt a Lump” (UK). Accessed September 15, 2014. http://vimeo.com/59580953. Cancer Research UK. 2015. “We’ll Beat Cancer Sooner.” Accessed September 15, 2014. www.cancerresearchuk.org/about-us. Gardasil (HPV Vaccine). 2008. “I Chose” (USA/Canada). Accessed September 15, 2014. www.youtube.com/watch?v=gd4ypCXusrI.

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Macmillan Cancer Support. 2013. “Not Alone” (UK). Accessed September 15, 2014. www.youtube.com/watch?v=2BGrskynlGs. Princess Margaret Hospital. 2013. “Race for the Cure” (Canada). Protectasil (HPV Vaccine Parody). 2008. “Just Be a Smart Girl.” Accessed September 15, 2014. www.youtube.com/watch?v=Tvam_2s0Sq8. RaceForLife. 2013. “Cancer We Are Coming to Get You” (UK). Accessed September 15, 2014. www.youtube.com/watch?v=GWJEmMDQXoA. Well Woman Cancer Insurance (UK). 2009. “[Women] Like Me.” Accessed September 15, 2014. www.youtube.com/watch?v=iaJIpgAs9sM.

Other advertisements Congregation Tikvat Jacob (Manhattan Beach, California). October/November 2015. Flyer posted on Facebook for the event: “Know Your Risks with BRCA: A Closer Look at the BRCA (the Angelina Jolie gene) Mutations in the Ashkenazi Jewish Community.” [Events/Home Page] Accessed September 15, 2014. http://ctjmb.org.

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The clinical epistemology of Ludwig Binswanger (1881–1966) Psychiatry as a science of the singular Elisabetta Basso

Introduction To consider Ludwig Binswanger’s theoretical reflection on psychiatry as one of the contexts within which the concept of care can be conceived might raise some objections, insofar as “existential analysis” (Daseinsanalyse) seems to fail on the level of therapeutic praxis, that is, the level of concrete caregiving. Indeed, many psychiatrists equate existential psychopathology with a vaguely ethical-humanistic discourse on the care relationship focused on “listening” and “understanding” the sick person, rather than considering his/her experience of suffering as a pathological phenomenon to be treated in a medical context. In other words, this experience is supposed to be a “form of existence” and not a disease. Thus, for its detractors existential psychiatry does nothing but outline an anthropological doctrine, which sets itself against all forms of medical psychiatry, considered as “pathologizing.” In fact, historically, since its foundation at the beginning of the twentieth century, existential psychiatry has had an important role in the problematization of psychiatry as a medical science. At the time of its first development within German-speaking psychiatry, the phenomenological movement in psychopathology was sharply critical of the positivistic approach to mental diseases that characterized academic psychiatry at the end of the preceding century, especially represented by Emil Kraepelin’s idea that psychiatry should share the same premises and the same language of neurology and physiopathology (see Hirschmüller and Whitrow 1999). It is in this critical context that some parts of the academic medical world in Switzerland and Germany became interested in the role that psychology could play within the field of clinical psychiatry. In this regard, it is especially worth mentioning the interest that Eugen Bleuler and his circle of psychiatrists at the Burghölzli in Zürich took in the first psychoanalytic theories (Bleuler 1911), as well as the attempt by Karl Jaspers in Heidelberg to build an “understanding psychology” (verstehende Psychologie) targeted to elucidate the psychic genesis of the subjective psychopathological phenomena and

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their connections (Jaspers 1913a; see Basso 2010). The main problem at stake, at that time, was indeed the definition of the “nature” of the various forms of psychosis—and, consequently, the location of their etiology—as well as the clinical methodology needed for approaching their manifestations. This problem implied a discussion about the ontology of the pathological and, more specifically, the question of whether “dementia praecox” or schizophrenia is a natural entity or whether it depends on a biographical and historical normativity (see Roelke 2000). Now, Ludwig Binswanger’s existential project contributed in large part to the critique of Emil Kraepelin’s anatomopathological approach, as well as to the development of the psychological research in the field of clinical psychiatry. This is the reason why, in more recent times, existential psychiatry has become one of the most meaningful theoretical landmarks of the anti-psychiatric movement. During the 1960s, indeed, such authors as Karl Jaspers, Ludwig Binswanger, and Eugène Minkowski are strongly present in the works of the Anglo-Saxon antipsychiatrists Roland Laing and David Cooper (Laing 1960; Laing and Cooper 1964).1 It is also worth mentioning that Michel Foucault, who was among the first to introduce to France the works of Ludwig Binswanger during the 1950s, contributed significantly to the critique of medical psychiatry with the publication of his History of Madness, whether he intended to or not2 (Foucault 1954, 1961, 19653, 1985). Indeed, when this book appeared in France in 1961, some of the most influential French psychiatrists called Foucault’s intellectual approach “ideological,” and accused him of trying to “kill psychiatry” (Ey 1971, 225). Franco Basaglia’s work in Italy (1981) during those same years similarly takes as its reference both extistential psychiatry and Foucault’s work. Now, the program of the anti-psychiatric movement consisted precisely in the will to demedicalize mental illness and, as a consequence, to conceive madness as a pre-scientific phenomenon to be considered either as the effect of social constraints or—as Foucault put it in the 1950s—as the expression of “what is most human in men” (Foucault 1994, 137). This is the reason why the French philosopher Henri Maldiney could affirm, in the 1970s, that “if the phenomenological attitude had prevailed in psychiatry, anti-psychiatry would not be born” (1976, 515). In what follows, by expounding the theoretical principles of Binswanger’s Daseinsanalysis, I will put into question the idea that existential psychiatry, at its origin, was founded and developed as a purely philosophical and anthropological theory in opposition to the scientific framework of the medical psychiatry of the early twentieth century. Through the example of Binswanger’s clinical project, my aim is to present the model of an ethical approach to psychiatry in which the theoretical principles about how to properly deal with patients are not just applied to psychiatric knowledge extrinsically, from an ideological point of view, but directly originate from an epistemological demand for scientific rationality. In other words, the ethical commitments of the existential approach to the subjectivity and the singularity of the patient are immanent to the epistemological questions that are the basis of the adoption of phenomenology by psychiatry. As I will try to show, indeed, one of the major theoretical reasons that motivated the method of

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Daseinsanalysis at the beginning of the twentieth century was the demand for accounting objectively for the subjective and individual nature of psychopathological experiences. This current of psychiatry, therefore, turned to philosophy not to distance itself from medical science but to find a kind of scientificity that would allow it to find its own place alongside the other branches of medicine.

The epistemological issue I have chosen to focus on Ludwig Binswanger because his work still today stands as one of the most meaningful examples of the phenomenological currents of psychiatry. Binswanger received his first training in psychiatry in one of the most distinguished European psychiatric institutes, the Burghölzli in Zürich, which was directed by Eugen Bleuler and his young assistant, Carl Gustav Jung, who supervised Binswanger’s degree in Medicine in 1907. Thanks to Bleuler, Binswanger had the opportunity to deal with the most important developments of the academic psychiatry of his time, and more specifically with the attempt to face the psychopathological diseases according to the perspective of the emerging dynamic psychology (Bleuler 1906, 1910, 1911; Jung 1907, 1908). Although he belonged to a family of psychiatrists going back three generations—he was the nephew of the famous Otto Binswanger, who was professor at the University of Jena—Ludwig Binswanger was sensitive to the needs for renewal of clinical knowledge at a time when academic psychiatry was dominated by Kraepelin’s dogmatic approach. Even after he abandoned academia—he indeed devoted his entire career, from 1908, to the Bellevue sanatorium in Kreuzlingen, which had been founded by his grandfather in 1857, then directed by his father (Binswanger 1957a; Herzog 1995; see also Moses and Hirschmüller 2004)—the young psychiatrist pursued the scientific task to face “the dilemma in which psychiatry [wa]s involved” between the possibility “to decide whether to just remain an applied science, namely, a conglomeration of psychopathology, neurology, and biology, held together simply by its practical task, or to become a unitary science” (Binswanger 1955, 65). At a time when nosological theorization in psychiatry went along with a therapeutic experimentation guided by an empirical effectiveness that did not always correspond to the standards of objective verification demanded by scientific knowledge,4 Binswanger tries to efface the boundaries between clinical praxis and epistemological reflection by an attempt to develop a theoretical model directly rooted in the clinic. Indeed, the problem he tackles during the 1910s and the 1920s is to reconcile the demands for objectivity of medical knowledge with the historical, individual features presented by psychiatric clinical cases. This is an issue that entails major consequences from an epistemological point of view, insofar as the attempt to account “scientifically” for individual subjectivity—at a time when psychiatry aspired to an objectivity intended as the end result of a battle against subjectivity5—implied the need to reconsider the meaning of “science” in the field of psychiatric knowledge. It is precisely such an issue—that is, the need to bridge the gap between the concrete and singular data of pathological manifestations and

182 Elisabetta Basso explanatory categories meant to describe and classify them—that drives Binswanger toward phenomenology. Here, indeed, he recognizes a method that, while representing an alternative to the reductionism of the materialistic approach, was no less scientific than the medical knowledge of his time. Therefore, Binswanger’s anthropological approach to psychiatry presents itself as the example of an epistemological reflection, which cannot be separated from the concrete clinical questions that urge and challenge it. This is the reason why I think that this approach represents an example of the way in which philosophical speculation has meaningfully contributed to stimulate—in the form of an epistemological problematization of the relation between concrete singularities and scientific universality in the field of clinical medicine—reflection on the issue of the care relationship in psychiatry. In what follows, I will deal specifically with one of the key concepts of Binswanger’s methodological approach, namely, the notion of “a priori structure” of experience. The aim of the investigation is to show that this concept takes root in the psychopathological clinic. I will analyze this concept starting from the complementary issues of diagnostic practice and taxonomic research in Germanspeaking psychiatry at the beginning of the twentieth century, when Binswanger published his first works.

The scientific context of Binswanger’s early works In a conference that he held in 1914 in Kreuzlingen, Binswanger brings up the matter of the most urgent psychological questions of the clinical psychiatry of his time and wonders especially about the relationship between the status and the role, respectively, of the psychic and the biological in the genesis and the evolution of psychosis. He starts by dealing with the methodological and clinical objections that had been made to the prevailing psychiatric positions at the beginning of the century, and he discusses the main authors that had put into question Kraepelin’s organicist standpoint with regard to the problem of the nature of mental diseases. One of the first authors mentioned in this text is the German psychiatrist Alfred Hoche (1865–1943), who had opposed Kraepelin’s positions with a constructionist view according to which the classificatory schemes drawn by psychiatry are the historical products of human thought, that is, they are subject to a prevailing scientific paradigm (Hoche 1906).6 The arguments presented by Binswanger come from an article that Hoche had published in 1912, in which he dealt with the “significance of symptom complexes in psychiatry” (see Berrios and Dening 1991). In this text the German psychiatrist drew a distinction between organic psychoses and “functional” psychoses, namely, between those psychopathological phenomena presenting physical correlations, and those disturbances that have nothing to do with pathological anatomy, not because psychiatry is simply unable to find their organic correlations, but “because they cannot have one” (Hoche 1991, 335). Hoche introduced therefore the concept of “symptom complexes” (Symptomenkomplexe), which he conceived as a whole of individual, psychic behavioral units that do not depend on a physical determinism, but “obey [their] own laws, [and are] yet

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incommensurable with material processes” (1991, 340). In other words, as Hoche maintained, “psychic disturbances group themselves” (1991, 342). Although Binswanger (1914, 576) blames Hoche’s position for “bringing again in the foreground the very old view according to which the psychic would be a category totally new and close in itself,”7 he especially appreciates the concept of “symptom complex,” that is, the insight concerning the self-organization of the psychological symptoms. As I am going to demonstrate, the idea of a self-normativity of the pathological will indeed become the theoretical ground of his theory by the 1920s. This is a conception that has very important consequences from both a methodological and a clinical point of view. Indeed, if “psychic disorders group themselves” (Hoche 1912, 550) then the psychiatrist no longer simply collects the extrinsic psychopathological symptoms, but lets him/herself be guided by these disorder’s self-organization. As Binswanger will point out later in his study on the flight of ideas, the psychiatrist should approach the psychopathological phenomena “from within” (1992a, 171), moving from the different ways according to which these phenomena “give themselves by themselves” (1992a, 215). In his text of 1914 Binswanger proceeds with a conceptual survey by dealing with Karl Bonhoeffer (1868–1948)8, who had opposed Kraepelin’s etiological approach with the example of the functional or “symptomatic psychoses,” namely, those “exogenous reactions” or “typical form of psychic reactions which prove to be relatively independent of specific forms of noxae” (Bonhoeffer 1910, 106; see Neumärker 2001). Although he acknowledges the important role Bonhoeffer allowed to psychology and its interpretations, Binswanger criticizes him for not having been able to clarify the specificity of the psychic, that is, to grasp and elucidate the specific rules governing the typical forms of its organization. It is in Eugen Bleuler’s Dementia praecox oder Gruppe der Schizophrenien (1911) that Binswanger finally recognizes the only model capable of distinguishing between the concept of pathological “process” (concerning the brain alterations, and the pathogenic noxae), and the concept of the “reaction” of the ill psyche, without thereby forcing psychiatry to regress to “psychologism” (Binswanger 1914, 579, 584). According to Binswanger, thanks to the distinction between the primary or fundamental symptoms, which contribute directly to the pathological process, and the secondary or psychological ones, which result only from the reaction of the sick mind to some internal and external processes, Bleuler was able to reconcile the two dimensions of, respectively, the organic and the psychic, without opting dogmatically for one or the other. This is why Binswanger places Bleuler’s psychiatric work “at the intersection between Kraepelin’s approach and the purely psychological approach” (1914, 578). Moreover, while admitting an organic pathological process as the grounds of the primary symptoms, Bleuler admits that, “we do not know what the schizophrenic process is” (1998, 376). He maintained also that: The evolution of the symptoms and that of the pathological process do not go necessarily hand-in-hand and it may well be that faced with the same brain

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The only field of action for the psychiatrist, therefore, is psychotherapy only, even though Bleuler states that “unfortunately, neither here have we exceeded the simple empirical approach” (1998, 383). Nevertheless, despite the “embryonic state of psychology,” he programmatically maintains that it is only from the clarification of the “psychological relations” in the field of psychiatry that it is possible to expect new insights on the nature of psychosis (Bleuler 1911, 15; see Scharfetter 2001). It is precisely within this context that Bleuler’s psychiatric circle in Zürich welcomed Freud’s psychoanalysis. The psychoanalytical theory, in particular, was acknowledged by this part of academic psychiatry with the capability of giving a verification method—and therefore a scientific status—to the psychological investigation of the psychopathological phenomena. For this reason, between 1906 and 1911, the works of Bleuler had been devoted to finding in the psychiatric secondary symptoms the same complexes and mechanisms that the psychoanalytical approach had recognized in normal psychic functioning and in particular in dream life, namely, condensation, displacement, and symbolism (Bleuler 1906, 1910, 1911; see De Ridder and Corveleyn 1992). What psychoanalysis allowed Bleuler to do, in particular, was to reconcile the medical concept of the causality of the pathological with the idea of its genesis. As he clearly stated in his work on the group of schizophrenia: Of course there is no relation of mutual exclusion between the acute exacerbation of brain processes and the psychic triggering experience. Thus, in most cases the two causalities concur to create the symptomatic psychotic complexes. (Bleuler 1998, 374)

Psychoanalysis and phenomenology: the debate between Binswanger and Jaspers (1913–14) The interest of the young Binswanger in Freud’s theories dates back to this period and it is exactly in 1908 that he begins his 30-year-long correspondence with Freud (Binswanger and Freud 1992). Early in his psychiatry career, Binswanger employs Freud’s analytical method with his patients, as it is clearly demonstrated in a case study of hysteria that he worked on during his internship in Jena (1907–8) and that he published in 1909 in the journal edited by Bleuler and Freud, the Jahrbuch für psychoanalytische und psychopathologische Forschungen. It is precisely Binswanger’s adherence to psychoanalysis that in 1913 triggers a lively debate with Karl Jaspers, who had published in this same year an essay on the “causal and ‘understandable’ relationships between events and psychosis in dementia praecox (schizophrenia),” in which he sharply criticizes Freud’s

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interpretative method (Jaspers 1913b; see Bormuth 2006, 7–35). The subject on the agenda, for Jaspers—as for many psychiatrists at that time—was again the definition of the “reactive psychosis.” In his view, schizophrenia should be approached according to two perspectives, which, while related, should be kept distinct from each other: on the one hand, one has to consider the emotional triggering moment that acts as the physical “cause” of psychosis, while on the other hand, the “understandable relations” are on the basis of its individual psychological development. For Jaspers, neither one nor the other of these two perspectives could fully elucidate the genesis of psychosis. Moreover, they should not be confused and if, on the one hand, it would be wrong to try to “understand” the cause of a mental disease, on the other hand, psychological relationships could not be “explained.” In other words, according to Jaspers, it is not possible to conceive something like a “psychic cause,” since the psychic relationships are individual matters that can only be partially and intuitively understood (einfühlendes Verstehen). Thus, even though it would be possible to reconstruct the genesis of certain psychic relationships, one can never grasp them completely from a purely rational, causal standpoint. Any interpretation built on causal explanation—like Freud’s interpretative method—is therefore nothing but an arbitrary conjecture. This is a thesis that Jaspers further expounded in his treatise on General Psychopathology (1913), by dealing with the difference between “understanding” (Verstehen) psychic relations, and “interpreting” (Deuten) them.9 According to him, while understanding enables us to reconstruct the genesis of certain psychic relationships—either directly or indirectly, namely, clarifying connections that are not immediately visible or not noticed (unbemerkt)—interpretation, on the contrary, would force us to suppose extra-conscious facts with the aim to achieve an understanding and to formulate an explanation. The clearest example of this approach, for him, was Freud’s theory of “psychic mechanism,” a theory that entailed a conjectural and incautious construction of extra-conscious events. Psychoanalysis would have therefore confused the understanding of psychic facts with their causal explanation, and worked out, on this basis, a theory of the psyche and its functioning, whereas the work of understanding can never give rise to theories. Binswanger opposes this position with some critical remarks that he published in 1913 in the psychoanalytical journal Internationale Zeitschrift für ärztliche Psychoanalyse. What he cannot accept about Jaspers’s view is the impossibility of formulating laws and theories in the field of the psychic. This is the reason why Binswanger defends Freud’s analytical approach. More specifically, he defends its capability of “disentangling” and “ordering” the psychic facts to organize them in a general theory (Binswanger 1913, 386). According to him, Freud had been able to develop a method by which the psychic facts could be approached and explained by following their own organization. In other words, the “rational a priori rules” that psychoanalysis had discovered in the psychic experiences were formulated on the basis of these experiences themselves, from their “motivational connections of meaning,” as Binswanger specifies at the beginning of the 1920s

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(1924, 410). According to his reading, the choice of clinical psychiatry to adopt Freud’s methodology could allow it to renounce the postulation of abstract categories. The work of the psychiatrist would consist therefore in letting him/herself be guided by the immanent structural relationships and principles that, at the same time, govern the individual psyche and lead the clinician to understand it. Psychoanalysis, therefore, would be able to reconcile Jaspers’s intuition of the singularity of the clinical case with the need for the generalization required by scientific theories. Thus, in his article of 1914 Binswanger complains of “those criticisms that limit themselves to consider that Freud would have merely enriched our knowledge with the psychological relationships of neurosis and some psychosis” (1914, 581). In fact, he maintains: The relationships revealed by Freud do not allow us at all to understand psychologically (after the manner of Jaspers) the content of a neurosis or a psychosis, but they rather offer us an outlook of their global construction, their structure, and their genesis. (Binswanger 1914, 581) According to Binswanger, psychoanalysis presents clinical psychiatry with the clinical insight of the self-organization of the psychic material, that is, the idea that the “ordering principle,” or the “scheme targeted to order the symptoms” needed by the psychiatrist in order to classify and diagnose the pathological phenomena, is furnished by these phenomena themselves (Binswanger 1957b, 27). It is an approach that is adopted also by Binswanger as the fundamental methodological principle of his Daseinsanalyse. As he states explicitly in the Preface of his study of Schizophrenia in 1957—in which are collected some of his most meaningful clinical cases—the “existential analysis” is a method that enables the psychiatrist to “order the enormous amount of data of singular clinical cases” by following their immanent normative structure (1957b, 27). As a consequence, the various forms of mental illness should not be approached from an etiological standpoint, nor from the pure collection of symptoms, but only by looking for the fundamental ordering structures that govern their organization. This idea of the self-organization of disease presents itself as an answer to the problem of the ontology of the pathological, which was central to the psychiatric debate on schizophrenia at the beginning of the twentieth century. If, according to Kraepelin, schizophrenia was a natural entity—which means that on its basis there would be a natural, physical normativity—the introduction of the problem of the “psychic” forces psychiatry to admit another concept of normativity that does not necessarily correspond to the one acknowledged by organic medicine. It is exactly in order to answer this epistemological need that Binswanger turns to phenomenology. What attracts Binswanger toward Husserl’s approach—and, later, toward Heidegger’s analytics—is precisely the idea of the possibility to understand the individual phenomenon by grasping its inner “norm,” a norm that Binswanger recognizes as the “a priori structure” of the singular psychopathological fact. Indeed,

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the question about the ability of grasping the “essence” of a phenomenon in the empirical fact was one of the main concerns of phenomenology in Husserl (1962, 1976, 1999), and the method of the apprehension of the essence was therefore central to phenomenological investigations into the problem of conceiving generalities from singular experiences. Now, according to Binswanger, the inner normativity of a psychopathological behavior consists in a psychic configuration, which can be detected by following some typical sense relations (Sinnzusammenhänge) that govern behavior, thereby making possible a priori its different expressions. These sense relations can articulate themselves, for instance, in a specific organization of the spatial and temporal coordinates, and give rise to specific “forms of existence,” like for instance mania, depression, obsessiveness. Binswanger also refers to these forms of existence in terms of “world-projects,” in order to emphasize—by integrating Husserl’s gnoseological insights with Heidegger’s existential analysis—the anthropological aim of psychiatric research. As Binswanger writes in an article from 1946, in which he presents the “The Existential Analysis School of Thought”: If, for example, we can speak of a manic form of life, or, rather, of existence, it means that we could establish a norm which embraces and governs all modes of expression and behavior designated as “manic” by us. It is this norm which we call the “world” of the manic . . . For we know well enough that that-which-is as such never become accessible to man, except in and through a certain world-design. (1958, 201) The ability of the psychiatrist consists therefore in going beyond the singular and contingent psychopathological manifestations in order “to look for the principle which rules the formation of the series” (Binswanger 1992a, 132), namely, the a priori structures of experience. The psychiatrist, in other words, should be able to create at once both the totality and the invariability from what is always partially and variably present in the individual. It is worth emphasizing here that, although the a priori structures function as ordering or “transcendental” schemes of experience—so that they cannot be reduced to the empirical individual experiences—they do not exist independently from these experiences. Binswanger insists on this point until the second half of the 1950s. In his study of Three Forms of Frustrated Existence, for example, Binswanger maintains that, although “fact should be grasped from its ‘essence,’ which works—according to Husserl—as the ‘insurmountable norm’ of a fact” (1992b, 411), “in contrast to Husserl, for us the facticity of the ‘natural world’ or the ‘natural experience’ never disappears” (1992b, 398). Thus, Binswanger employs the phenomenological concept of “essence,” as well as the concept of “a priori,” as a methodological tool targeted to clinicaldiagnostic goals. Within the frame of existential analysis, the “a priori structure” becomes an operational concept that emerges from the clinic, insofar as it cannot be theorized before its historical incarnation in a clinical case but, at the same time, it is supposed to guide clinical praxis. In the final analysis, Binswanger works

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out this concept in order to demonstrate the immanence of scientific categories to the facts that such categories are supposed to explain. The epistemological challenge of this notion consists therefore in its ability to meet both the scientific demand for objectivity and generalization of psychiatry as medical science, and the need to bring science back to the lifeworld—“back to the things themselves” —namely, the need to account for the historical, subjective singularity of psychopathological phenomena.

Epistemology and ethics: the care of singularity The commitments to the subjectivity of the patient are immanent to the methodological reasons that form the basis of Binswanger’s adoption of the conceptual instruments of phenomenology. The theoretical insights of Daseinsanalysis, therefore, cannot be considered separately from the clinical aims that, at the same time, motivate them, and arise from them. Now, the idea that the psychopathological phenomena are governed and can be grasped from their own structure or norm presents further meaningful consequences on an ethical level. On the one hand, as we have seen, the dissolution of the psychiatric nosological categories into transcendental structures leaves room for a greater openness toward the individual differences between the patients. On the other hand, it arises from here the idea that psychopathological experiences are not merely defective modes of health, but new forms of “being in the world.” It is a thesis that Binswanger supports by means of the insights formulated in the field of neurological research by the German psychiatrist Kurt Goldstein: Thus, the concept of pathological . . . wasn’t any more the expression of something purely negative . . . but it could be also conceived positively, on the basis of a norm. We owe Goldstein, in particular, the perspective according to which such a positive corresponds to a “new being in the world” (that is, a being ordered according to a norm, a sense, a structure) which one should characterize positively. (Binswanger 1992a, 104)10 It is a view that is also emphasized by Georges Canguilhem in his thesis on The Normal and the Pathological (1943), whose ideas are also connected to both existential psychiatry and Goldstein’s medical thinking. According to Canguilhem, “if we can speak of normal man as determined by the physiologist, it is because normative men exist for whom it is normal to break norms and establish new ones” (1989, 164–5). Interestingly, Canguilhem takes as an example the idea of pathological normativity as it appears in the field of existential psychopathology and he mentions one of the most meaningful French psychiatrists of the first half of the last century, Eugène Minkowski: The normal man is not a mean correlative to a social concept, it is not a judgment of reality but rather a judgment of value; it is a limiting notion which

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defines a being’s maximum psychic capacity. There is no upper limit to normality. (1989, 119) On these conditions, Canguilhem concludes: We find it sufficient to replace “psychic” with “physical” in order to obtain a very correct definition of the concept of the normal which the physiology and medicine of organic disease use every day without caring enough to state its meaning precisely. (1989, 119) This concept of the human biological normativity, which is worked out in the field of psychiatry, proves an ethical concept (see Debru 2011). Even though Binswanger’s work leaves more space for theoretical reflections than to the presentation of proper therapeutic techniques, it still remains a very important point of reference today for psychiatrists and physicians, but also philosophers who question the care relationship.11 Indeed, the existential approach leads to an optimistic view of the clinic that conceives the therapeutic practice—in the words of Lazare Benaroyo—as an activity that “does not confine itself to expect the patient to go back to the physiological norm, but emphasizes also the ability of the sick person to find a new norm of existence” (Benaroyo 2010, 27). Furthermore, according to this view, the psychiatrist-phenomenologist, thanks to his/her ability to detect the “meaning directions” (Bedeutungsrichtungen) that structure the world-project of a patient, is supposed to have the possibility to intervene directly in the formation of this project. The therapeutic activity has therefore the further aim to help patients to themselves intervene in the structure of their own worldproject, namely—in the words of Roland Kuhn—“to wonder about the style according to which they exist,” a style that consists “in a certain way of interacting with the world, the others, oneself ” (Kuhn 2007a, 96).12 Far from imposing itself from outside with its own rules and its own system of interpretation, therapy is conceived as “a new creative act” (Kuhn 2007c, 318). Hence the emphasis that the Daseinsanalysis puts on the temporal dimensions of present and future, rather than past. In fact, what matters for the psychiatrist-phenomenologist is the “actual and present situation of the unique encounter of two actual persons” (Kuhn 2007d, 143). In the final analysis, this inquiry into phenomenological psychiatry according to the model developed by Ludwig Binswanger presents us with the idea that in the domain of psychiatric care, scientific categories cannot be pure, since they are sought and therefore closely related to the embodied and embedded singular experiences that simultaneously resist categorization and test it. The example of the way in which existential psychiatry applies the methodological principles of phenomenology to the analysis of historical experiences could therefore stimulate a wider reflection on the role that philosophy and its theoretical instruments can still play, today, with regard to the way in which psychiatric knowledge works out its concepts on the basis of the clinical tasks that motivate them.

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Notes 1 We just recall here that the first work of R. Laing (1960) was subtitled “An Existential Study in Sanity and Madness” and opened with a quote by Eugène Minkowski. Furthermore, the Preface to the original edition of the book explicitly presented the volume as the first of a series devoted to existential psychology and psychiatry. R. Laing and D. Cooper’s Reason and Violence (1964), was also published in a series entitled “Studies in Existential Analysis and Phenomenology.” 2 In a famous 1980 interview, for example, Foucault explicitly distanced himself from the anti-psychiatric movement (Foucault 2000). 3 The first English edition of this book—under the title of Madness and Civilization— was the translation of a shortened French version. 4 According to J.N. Missa (2006), “therapeutic empiricism” was the main feature of psychiatry in the twentieth century. 5 According to Lorraine Daston and Peter Galison (2007)—some of the most influential researchers in the study of the history of sciences—the science of the nineteenth century struggled for an “objectivity” that presented itself as a fight against subjectivity. Science was therefore intended as the search for empirical proofs, as the attempt at having access to nature’s law by means of “experience” intended as empirical observation. It is a position that was still strong in medical sciences and psychiatry at the beginning of the twentieth century. 6 This is the text of a paper that Hoche read in 1906 in Munich on the occasion of the conference of the “German Association of Psychiatry (“Deutscher Verein für Psychiatrie”). Hoche had been Professor in Freiburg since 1902. 7 All quotes from Ludwig Binswanger are my translations. 8 Karl Bonhoeffer had been professor of Psychiatry and Neurology at the Charité in Berlin since 1912. 9 Jaspers 1913a, Chapter 3: “Die Zusammenhänge des Seelenlebens: I. Die Verständlichen Zusammenhänge.” 10 For a historical and theoretical account of the role of Kurt Goldstein’s epistemological insights within the medical sciences and clinical practice of his time, see Harrington 1996, Chapter 5 (140–74): “The Self-Actualizing Brain and the Biology of Existential Choice.” 11 See, for example, the special issue of La lettre du psychiatre 5(9): Actualité de la philosophie en psychiatrie (2009). See also Leroy-Viemon 2011. 12 See also Kuhn 2007b, 290: “The sick person gradually learns to replace his own free associations . . . with eidetic variations.”

References Basaglia, F. 1981. Scritti, vol. I: 1953–1968: Dalla psichiatria fenomenologica all’esperienza di Gorizia. Edited by F. Ongaro Basaglia. Torino: Einaudi. Basso, E. 2010. “‘Le rêve comme argument’: les enjeux épistémologiques à l’origine du projet existentiel de Ludwig Binswanger.” Archives de Philosophie 73(4): 655–86. Benaroyo, L. 2010. “Éthique et herméneutique du soin.” In Philosophie du soin: éthique, médecine et société, edited by L. Benaroyo, C. Lefève, J.C. Mino, and F. Worms, 23–36. Paris: PUF. Berrios, G.E. and T.R. Dening. 1991. “Introduction to A. Hoche: The Significance of Symptom Complexes in Psychiatry.” History of Psychiatry 2(7): 329–33. Binswanger, L. 1909. “Versuch einer Hysterie-Analyse.” Jahrbuch für psychoanalytische und psychopathologische Forschungen 1: 174–318; 2: 319–56.

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——. 1913. “Bemerkungen zu der Arbeit Jaspers’ Kausale und ‘verständliche’ Zusammenhänge zwischen Schicksal und Psychose bei der Dementia praecox (Schizophrenie).” Internationale Zeitschrift für ärztliche Psychoanalyse 1: 383–90. ——. 1914. “Psychologische Tagesfragen innerhalb der klinischen Psychiatrie.” Zeitschrift für die gesamte Neurologie und Psychiatrie 26: 574–99. ——. 1924. “Welche Aufgaben ergeben sich für die Psychiatrie aus den Fortschritten der neueren Psychologie?” Zeitschrift für die gesamte Neurologie und Psychiatrie 91: 402–36. ——. 1946. “Über die daseinsanalytische Forschungsrichtung in der Psychiatrie.” Schweizer Archiv für Psychiatrie und Neurologie 57: 209–35. ——. 1955. “Psychoanalyse und klinische Psychiatrie (1920).” In Ausgewählte Vorträge und Aufsätze, vol. 2: Zur Problematik der psychiatrischen Forschung und zum Problem der Psychiatrie, 40–66. Bern: Francke. ——. 1957a. Zur Geschichte der Heilanstalt Bellevue in Kreuzlingen 1857–1932. Zürich: O. Füssli. ——. 1957b. Schizophrenie. Pfullingen: Neske. ——. 1958. “The Existential Analysis School of Thought.” In Existence: A New Dimension in Psychiatry and Psychology, edited by R. May, E. Angel, and H.F. Ellenberger, 191–2. New York: Basic Books. ——. 1992a. Über Ideenflucht (1933). In Ausgewählte Werke, vol. 1: Formen mißglückten Daseins, edited by M. Herzog and H.J. Barun, 1–231. Heidelberg: Asanger. ——. 1992b. Drei Formen missglückten Daseins (1956). In Ausgewählte Werke, vol. 1: Formen miβglückten Daseins, edited by M. Herzog and H.J. Barun, 233–418. Binswanger, L. and S. Freud. 1992. Briefwechsel: 1908–1938. Edited by G. Fichtner. Frankfurt am Main: Fischer. Bleuler, E. 1906. “Freudsche Mechanismen in der Symptomatologie von Psychosen.” Psychiatrisch-neurologische Wochenschrift 8: 316–8, 323–5, 338–40. ——. 1910. “Die Psychoanalyse Freuds. Verteidigung und kritische Bemerkungen.” Jahrbuch für psychoanalytische und psychopathologische Forschungen 3: 623–730. ——. 1911. Dementia praecox oder Gruppe der Schizophrenien. Leipzig: Deuticke. ——. 1998. Dementia praecox oder Gruppe der Schizophrenien. Tübingen: Edition Diskord. Bonhoeffer, K. 1910. “Die symptomatische Psychosen im Gefolge von akuten Infektionen und inneren Erkrankungen.” In Handbuch der Psychiatrie, Sec. III, 1st Half, edited by G. Aschaffenburg, 1–118. Leipzig-Wien: Deuticke. Bormuth, M. 2006. Life Conduct in Modern Times: Karl Jaspers and Psychoanalysis, Chapter 2: The Critique of Psychoanalysis 1913–1920. Berlin: Springer. Canguilhem, G. 1989. The Normal and the Pathological. Translated by C.R. Fawcett and R.S. Cohen. New York: Zone Books. Daston, L. and P. Galison. 2007. Objectivity. New York: Zone Books. Debru, C. 2011. “The Concept of Normativity from Philosophy to Medicine: An Overview.” Medicine Studies 3: 1–7. De Ridder, H. and J. Corveleyn. 1992. “Eugen Bleuler (1857–1939) und die Psychoanalyse Zeitschrift für klinische Psychologie.” Zeitschrift für klinische Psychologie, Psychopathologie und Psychotherapie 60(3): 246–62. Ey, H. 1971. “La conception idéologique de l’Histoire de la folie de Michel Foucault.” L’Évolution Psychiatrique 36(2). Foucault, M. 1954. Introduction to Le rêve et l’existence by L. Binswanger. Translated by J. Verdeaux and M. Foucault. Bruges: Desclée de Brouwer, 9–128.

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——. 1961. Folie et déraison: Histoire de la folie à l’âge classique. Paris: Plon. ——. 1965. Madness and Civilization. New York: Pantheon Books. ——. 1985. “Dream, Imagination and Existence.” Review of Existential Psychology & Psychiatry 19(1): 29–78. ——. 1994. “La psychologie de 1850 à 1950” (1957). In Dits et écrits, 1954–1988, Volume 1. Edited by Daniel Defert and François Ewald. Paris: Gallimard: 120–37. ——. 2000. Interview with Michel Foucault (1980). In The Essential Works of Michel Foucault 1954–1984, Volume 3: Power, edited by J.D. Faubion, 239–97. New York: The New Press. Harrington, A. 1996. Reenchanted Science. Holism in German Culture from Wilhelm II to Hitler. Princeton, NJ: Princeton University Press. Herzog, M. 1995. Ludwig Binswanger und die Chronik des Klinik Bellevue in Kreuzlingen: Eine Psychiatrie in Lebensbildern. Berlin: Quintessenz. Hirschmüller, A. and M. Whitrow. 1999. “The Development of Psychiatry and Neurology in the Nineteenth Century.” History of Psychiatry 10(40): 395–423. Hoche, A. 1906. “Kritisches zur psychiatrischen Formenlehre.” Allgemeine Zeitschrift für Psychiatrie 63: 559–63. ——. 1912. “Die Bedeutung der Symptomenkomplexe in der Psychiatrie.” Zeitschrift für die gesamte Neurologie und Psychiatrie 12: 540–51. ——. 1991. “Die Bedeutung der Symptomenkomplexe in der Psychiatrie.” History of Psychiatry 2(7): 334–43. Husserl, E. 1962. Phänomenologische Psychologie: Vorlesungen Sommersemester 1925. Den Haag: Martinus Nijhoff. ——. 1976. Ideen zu einer reinen Phänomenologie und phänomenologischen Philosophie, 1: Allgemeine Einführung in die reine Phänomenologie. Den Haag: Martinus Nijhoff. ——. 1999. Erfahrung und Urteil. Untersuchungen zur Genealogie der Logik. Hamburg: Meiner. Jaspers, K. 1913a. Allgemeine Psychopathologie. Ein Leitfaden für Studierende, Ärzte, und Psychologen. Berlin: Springer. ——. 1913b. “Kausale und ‘verständliche’ Zusammenhänge zwischen Schicksal und Psychose bei der Dementia praecox (Schizophrenie).” Zeitschrift für die gesamte Neurologie und Psychiatrie 14: 158–263. Jung, C.G. 1907. Über die Psychologie der Dementia praecox. Halle: Marhold. ——. 1908 [1914]. Der Inhalt der Psychose. Leipzig-Wien: Deuticke. Kuhn, R. 2007a [1973]. “L’errance comme problème psychopathologique ou déménager.” In Écrits sur l’analyse existentielle, edited by J.C. Marceau, 83–110. Paris: L’Harmattan. ——. 2007b [1999]. “Approche de la pensée daseinsanalytique en psychiatrie et psychothérapie.” In Écrits sur l’analyse existentielle, edited by J.C. Marceau, 281–95. Paris: L’Harmattan. ——. 2007c [2001]. “L’essai de Ludwig Binswanger ‘Le rêve et l’existence’ et sa signification pour la psychothérapie.” In Écrits sur l’analyse existentielle, edited by J.C. Marceau, 309–20. Paris: L’Harmattan. ——. 2007d [1986]. “L’œuvre de Ludwig Binswanger, son origine et sa signification pour l’avenir.” In Écrits sur l’analyse existentielle, edited by J.C. Marceau, 131–48. Paris: L’Harmattan. Laing, R. 1960. The Divided Self. Harmondsworth: Penguin. Laing, R. and D. Cooper. 1964. Reason and Violence. New York: Humanities Press. Leroy-Viemon, B. 2011. Ludwig Binswanger. Philosophie, Anthropologie clinique, Daseinsanalyse. Paris: Le Cercle Herméneutique.

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Maldiney, H. 1976. “Psychose et présence.” Revue de Métaphysique et de Morale 81(4): 513–65. Missa, J.N. 2006. Naissance de la psychiatrie biologique: Histoire des traitements des maladies mentales au XXe siècle. Paris: PUF. Moses, A. and A. Hirschmüller. 2004. Binswangers psychiatrische Klinik Bellevue in Kreuzlingen: das Asyl unter Ludwig Binswanger sen, 1857–1880. Frankfurt am Main: Lang. Neumärker, K.J. 2001. “Karl Bonhoeffer and the Concept of Symptomatic Psychoses.” History of Psychiatry 12(46): 213–26. Roelke, V. 2000. “Naturgegebene Realität oder Konstrukt? Die Debatte über die ‘Natur’ der Schizophrenie, 1906 bis 1932.” Fundament Psychiatrica 2: 44–53. Scharfetter, C. 2001. Eugen Bleuler: Studie zu seiner Psychopathologie und Schizophrenielehre. Zürich: Juris Druck.

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10 Critique of solution-focused brief therapy Carlos Neves

Nothing fixes a thing so intensely in the memory as the wish to forget it. —Michel de Montaigne To dwell is to garden. (Heidegger, M. n.d.)

In 2011, the Ontario Government announced a new comprehensive mental health and addictions strategy intended to address the mental health needs of children, youth, and their families. In response to this announcement the Ontario Centre of Excellence for Child and Youth Mental Health developed a policy paper entitled No More, No Less: Brief Mental Health Services for Children and Youth (Duvall and Burden 2012). The paper was designed to tackle some of the barriers identified in the mental health and addictions strategy such as service gaps, increased demand for services, and long wait lists. Brief therapy services, including walkin clinics, where single sessions are offered, intake as a first session, extended intake, and focused consultation were positioned as part of the solution. All these services range typically from one session to six sessions, with some exceptions. Notably, the brief therapy model is generalized to adult populations as well, and in agencies that are fee-for-service, which include employment assistance programs and extended health benefits plans. A scan of mental health agencies, training centers, and universities offering counselling/psychotherapy/clinical social work degrees also suggests that the dominant approach is brief therapy. How did brief therapy models, in particular Solution-Focused Brief Therapy (SFBT) come to enjoy such a privileged status in the field of mental health today, and more importantly, what are the implications of such an approach for the practice of psychotherapy as a form of care? To begin with, the institution’s discourse advances the notion that the mental health system is in crisis, because there is a lack of capacity (scarcity of funding/resources) to respond to the need for mental health services. This notion is not new. It has been circulating since the 1980s and 1990s. The demand always seems to outstrip the supply. The second reason cited is that there is a patchwork of services that makes it difficult for people to navigate toward the right services.

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People are not getting what they need, even though what they need does exist— this may be defined as a “way-finding” problem. The third claim is that some services may be causing more harm than good, or that there are situations where services are ineffective. This latter concern triggers a whole industry of competency training, professional development, and evidence-based practice research to respond to this anxiety, and to position service providers as “ethical and effective” providers of care, who consequently are deemed fit to secure funding dollars. The brief service philosophy embraces a service ethic that ensures children, youth, and families receive exactly the amount of service they need—no more, no less. It assumes that youth and families can and should be involved in services for a shorter period of time. Recognized brief therapy approaches include collaborative, client-centered models used by skilled clinicians such as narrative therapy and solution-focused therapy . . . by providing brief but effective interventions, precious system resources are freed up to provide adequate care for children and youth who have more intensive needs. (Duvall and Burden 2012, 4) The idea that service can be reduced to an amount, and that “children, youth and families can and should be involved in services for a shorter period of time” is a peculiar one. The assumption is that service is a thing that can be dispensed, and as such, too much and too little service is undesirable and perhaps harmful. Yet, in the next statement, the “should” pops up and clearly the bias is for less, as if there is some kind of magical line or threshold of services, that if crossed will have negative effects. Brief therapies are then offered as an ethical solution to the danger of doing harm by guarding against giving “unnecessary care,” meaning “prolonged care” to clients. But what kind of “harm” is envisioned here? When the shift to “managed care” occurred in the late 1980s and 1990s the terms of the discourse changed from a healthcare system that “lacked resources” and needed more public and political support to fund mental health programs, including greater access to psychotherapy services, long-term if needed, to one that pitted an “individual ethic” against a “social ethic” (Austad 1996). Apologists for managed care corporations claimed that mental health professionals and social service agencies who criticized the emergence of managed care as a heartless attack on those in need of ongoing psychotherapy were themselves behaving in an unethical and self-interested manner. Proponents of ongoing care were cast as selfserving entrepreneurs who were neglecting the social responsibility of distributing care to those who “really need” it. Most notably, Austad (1998) argued that certain providers and users of longer term therapy services, funded by insurance companies, or paid for by the state, or out of pocket, all contribute to depriving those who really need therapy from getting access to care. One could argue that this stance prepared the way, ideologically, for a reception of brief therapy models, in particular SFBT as the exemplar of a socially responsible (cost effective and collaborative) model of care.

Critique of solution-focused brief therapy 197 For decades, common factors research has demonstrated the effectiveness of all kinds of psychotherapy, psychoanalysis included, and recently there is evidence to suggest that psychodynamic therapies are more appropriate for clients with complex mental health needs, or what is referred to in the literature as “moderate to severe difficulties in functioning.” I can count on one hand the number of articles that attempt a critique of SFBT in the literature. In a systemic evaluation of the studies of SFBT from 1990–2010, the conclusion was that “the evidence base itself continues to be relatively weak, with only five high quality studies identified” (Bond et al. 2013, 720). I am not going to dwell on this aspect any longer. My interest is not in the strengths and weaknesses of the evidence base, but rather in attempting a critical description of how the assumptions of the model, as well as the techniques employed, can be seen to project a notion of caring and therapeutic action in the service of suppression and splitting, rather than a process that is revelatory and integrative. James Hollis (1998, 21–2) puts what I have in mind here rather well: The tragedy of modern psychotherapy is that in most cases it is not truly psychological, that is, it does not track behavior back to its origins in the soul (which is what the word psyche means after all). To correct the behavior without understanding the psychic dynamics is to remain superficial. While one may correct a behavior or alter a cognition, the wound to the soul will simply find another, perhaps more subtle, venue for its expression.

The origins and assumptions of SFBT Solution-focused brief therapy emerged as part of the Brief Therapy movement in the mid-1980s. It was developed at the Brief Family Therapy Center is Milwaukee, by Steve de Shazer and his colleagues. The approach originated in response to observations that there were inconsistencies to be found in problem behavior, and that solutions to the problem do not require insight (Iveson 2002). Out of this the notion of “exceptions” to the problem behavior emerged, and out of these exceptions the belief that the “seeds” of the client’s own solution were already present, but eclipsed by “problem talk.” In addition to shifting the emphasis from tracking the “problem” and its causes in favor of “exceptions” and strengths (i.e., in order to promote awareness and belief that the client can improve, because they already possess solutions, rather than insight into how past experiences shape behaviors and meanings), the founders, de Shazer and Berg, were adamant that measurable goals be set in the first session, and that the question “How will we know when the problem is solved?” be asked right away so that clients and therapists would know when it was time to end therapy (de Shazer et al. 1986, 210). As the practice of SFBT developed, emphasis on exceptions to the problem was replaced by an interest in what the client is already doing that might help achieve the solution (Iveson 2002). One implication of this is the belief that all clients are motivated to change, and that the client’s attitude to the problem is no longer

198 Carlos Neves relevant. “All that clients need is to want to do something different—even if at the starting point they do not think that something different is possible” (Iveson 2002, 149). The imperative to contract in the first session to decide when the client will know “the work is over” by noticing when X, Y, or Z is happening is said to empower the client in that she/he becomes better at recognizing when the change is happening, thereby increasing feelings of competence and self-esteem. But this technique also encourages the client to imagine the termination of the relationship before an attachment can be formed, which inoculates against transferring feelings and thoughts pertaining to early figures to the therapist as an attachment figure (Farber, Lipert, and Nevas 1995). Opportunities for internalizing new, let us say “reparative,” experiences with the therapist on a relational level are short-circuited, as is the possibility of clarifying how the client’s relation to him/herself and others, that is to say, his/her desire, may be structured by the interpersonal template derived from his/her attachments to significant others. Working through transferential affects and cognitions as part of the process of “healing” and “psychological growth” requires relational commitment over time with a therapist who the client trusts will survive his/her projections: that is, the therapist will not abandon the client as his/her beliefs and expectations about self-other relationships get articulated and examined in the here and now of the transference.

Transference/counter-transference and anxiety of confrontation When one is disappointed, one is always wrong. You should never be disappointed with the answers you receive, because if you are, that’s wonderful, it proves that it was a real answer, that is to say exactly what you weren’t expecting. (Lacan 1991a, 237) In SFBT, the desire of the therapist is articulated explicitly in the first session as one that is interested in the alternative story, the strengths-based story, the wished-for future. This interest is made manifest by asking questions designed to evoke expected answers, answers that will serve as the building blocks leading to the “preferred future.” Then, the therapist takes the clients’ expected answers and coaches him/her on how to build the wished-for future, with no reference to the problem, to the influence of the past, or the relational dynamics of the therapist–client dyad. But what to do with answers that are not expected? What to do when the client refuses strengths-based talk and instead focuses on the problem? Dwelling on the problem, with the affective charge of the psychic wound and its relational origins, its template for self-other relations—that is seen as irrelevant for psychological growth and change in SFBT. One is tempted to ask, what might the claim that “insight is not needed for change” be masking? Why turn away from the reflection into how the imprinting of the past leaves its trace in our souls and in our relational habits? Heidegger invites us to consider the notion

Critique of solution-focused brief therapy 199 that “to dwell is to garden.” Is it not desirable, to recover the capacity to reflect on the place of the past in our present lives, so that what is remembered can be liberated from the compulsion to be repeated, and forgotten, properly speaking? Freud taught us that which resists symbolization (the repressed), or in Lacan’s idiom the traumatic Real, does not dissolve into nothingness if neglected, but rather returns in symptoms as the “return of the repressed” wreaking havoc in our lives. It is with this element, the repressed and its defenses, that through the transference an engagement and confrontation can take place. Sailing over it, rendering it “irrelevant,” certainly in most cases risks being consciously and unconsciously welcomed by the clients we work with as it allows client and therapist to avoid uncomfortable aspects of self that remain disowned, or split-off. But what of the therapist’s defenses and aversions in the SFBT model? The general trend in brief therapy, in particular single sessions, is to validate the client’s story and to avoid problem talk and confrontation whenever possible. The suggestion is that if our mode of helping clients is more congruent with their self-understanding (which may include unexamined notions of themselves as victims, perpetrators, rescuers, heroes, etc.), including their beliefs about what is causing the difficulty and what would remove it, then co-constructing a solution, a “preferred future” or “alternative narrative” (in the jargon of solution-focused and narrative therapies), will yield good outcomes! If we push this logic to its conclusion we arrive at this absurd statement. The client gets good service, good care (because in this model, servicing is equated with caring), when they get exactly what they want! But what people want is not at all as straightforward and selfevident as we might imagine. Brief therapies and the interpersonal matrix that they conjure up do not exist long enough to be present to the gravitational pull of old habits and impulses that inevitably reassert themselves once the euphoria of the “new narrative” wanes. In SFBT, therapists are not there in the longer run to attend to the disappointment of setbacks, to the repetition of “problems” that reemerge once the power of suggestion fades. Strengths may have been brought into the light, obsessively so, but by denying any articulation with the problems, fears, anxieties, the mind–body nexus of creative defenses and symptoms, that is to say, with no attention paid to the dynamic aspect of the psyche, its regressive, not just progressive dimension, goes neglected. It is as if the therapist’s fear of being confronted with the client’s despair and anger manifests in the therapist’s avoidance of confronting and investigating the significance of the client’s speech in the transference. We might argue that in SFBT the therapist’s counter-transference is manifested as a philosophy and technique. By constructing the client’s desire to talk about the past and to dwell with the “problem” as a “distraction” from solution finding, the philosophy and technique of SFBT betrays a deeper fear, namely, the fear of transference and the demand that this places on the therapist to “carry” and/or “parry” the projections in whatever manner facilitates psychological growth and resolution. I don’t deny that there is some value in brief therapy, but all too often, too much is asked for, and therapists are all too happy to facilitate the fantasy that anything

200 Carlos Neves is possible, without challenging the fundamental fantasy of their clients, a fantasy that sometimes equates, confuses, mixes, hallucinates, combines, we might even say “acts out” the desires of those psychologically charged others who impinge themselves upon them. The question is not, what needs to be done to get what you want, but rather whose desire is it anyway that brings you to this place here and now, and what is desire making of you, demanding of you? How did such a disavowal of the vicissitudes of desire and its history, and with it psychodynamic therapies that in varied ways provide some equipment to traverse one’s fantasies of self-other, so as to discover always partially, tentatively, and forever provisionally the language of the self’s attempts to conceal from its sight, feelings, impulses, and experiences that it wants to know nothing of, despite pleas to know? How did such a turning away from psychotherapy’s vocation as a “curiosity profession” in the service of coming to know what we want and do not want, what we know but want to forget, get eclipsed in favor of SFBT, whose raison d’être is curiosity in the service of shifting attention away from psychic pain, bewilderment, stubborn repetition of trauma, toward the ego’s signs of mastery (i.e., exceptions to the problem, examples of coping, acts that suggest an actor that is strong, whole, powerful, free of doubt, free of confusion, free of anguish in the face of the enigma of his desire)?

Speaking, listening, and hearing Each time a man speaks to another in an authentic and full manner, there is, in the true sense, transference, symbolic transference—something takes place which changes the nature of the two beings present. (Lacan 1991b, 109) The use of language in SFBT is worth examining from the perspective of the effects it produces. The deliberate censure of free association, of free-floating attention, of insight-oriented and symbolic work, communicates the therapist’s desire to the client in subtle ways. The therapist’s desire presses upon the client as an interrogator with an already established set of aims, avoiding certain themes that are unspoken or minimized, such as problem talk, family of origin talk, depressive affect, historical grievances, and especially awkward moments, misunderstandings, or what therapists call ruptures in the therapeutic relationship. We find here instead an obsessive focus on the future, a prompting for exceptions, and an exaggerated belief in the existence of competencies no matter how dire the situation appears. Through their use of language, SFBT therapists create effects that reflect their model’s assumptions. “They use exceptional (looking for exceptions to the problem) and presuppositional (assuming people have the ability to change) language to emphasize client strengths, competencies, and areas of expertise” (Dermer et al. 1998, 246). The “miracle question” is perhaps the most celebrated use of this technique of language. It is formulated and executed in the following way: if a miracle occurred in your sleep and the problem that brought you in was gone when you woke up in

Critique of solution-focused brief therapy 201 the morning, but since you were sleeping you did not know the problem was gone, what would you notice would be different upon waking? What would your family or friends notice? Is some of this miracle happening already? What needs to happen for this miracle to happen more often? This question and the follow-up to it functions as a rhetorical set-up to convince the client that he/she already practices the change in some way and that all that is needed is to do this miracle, small steps, more often. By asking what would be different and pointing to instances where this is already happening, the goals can be set, and the narrative becomes one of empowerment and competence rather than exploring the significance of negative feelings such as bewilderment, shame, guilt, fear, etc. The next stage is to motivate the client to “do something different” to create different results, thereby “empowering” the client. Offering compliments is also an explicit strategy designed to divert clients from depressive affect and from a self-conception that would have them at the mercy of their problems. Instead clients are talked about as heroic, resourceful, doing the best they can, and already practicing the change, because they want the change. But what of clients who think they want change, but actually dread it for reasons that escape them, something they know but refuse to think? In SFBT the client is incited to speak, to follow, to complete the speech of the therapist, rather than to bring into the realm of speech that which has never been spoken, and that is only intimated in the cracks and slips and nonsense (Fink 2007). This is so in large part because the therapist does not listen for, does not hear all that is spoken by the client that does not fit in with the frame. In other words, in SFBT the therapist’s use of language to prompt the client to speak is constrained in principle to attend to what is immediately meaningful, what is relatable to the “goal,” what is comparable to what the therapist imagines his/her own experience would be like if he/she were in the subject’s shoes seeking solutions. In short, when the therapist remains at the level of the “imaginary” he/she can only notice reflections of his/her own solution-focused ego, only what is immediately comprehensible and in the service of solutions. To quote Bruce Fink (2007, 6): (W)hatever is not immediately meaningful or comprehensible—slurs, stumbling, mumblings, garbled speech, spoonerisms, pauses, slips, ambiguous phrasing, malapropisms, double and triple entendres, and so on—is set aside or ignored . . . (T)his essentially means that the more the analyst operates in the imaginary mode, the less she can hear. Contrary to what is preached, the belief that SFBT is collaborative, democratic, and that it deconstructs power in the therapy relationship is dubious. From a certain perspective it is rather the epitome of power and control, insofar as the therapist’s desire to shape the language of the subject, by suppressing the unruly forces of the unconscious, by denying and disavowing its language of symptoms, parapraxes, slips of the tongue, changes in topic, deflections, etc.—by ignoring them, and in some cases actively constraining the subject to get back on to the topic. These rhetorical strategies may end up reinforcing avoidances and defenses that no longer function to hold the subject together. In fact, deflecting, avoiding,

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and steering away from problem talk sends the message that psychic pain is uninteresting and intolerable, hence threatening to the therapist, and as such shameful for the client. In other words, the desire of the therapist as a solution finder, as a coach with an eye on the goal, risks being absorbed and identified with as the client’s desire, sidestepping the articulation of the client’s real desire, of symbolizing her/his desire as perhaps other than what the subject thinks she/he wants under the spell of the imaginary relationship with the therapist. If psychoanalyst Heinz Kohut (1984), who would later found self-psychology, was correct in his assertion that therapeutic change occurs through “transmuting internalizations” of the client’s experience of the therapist as a nurturing, wise, and sufficiently alike figure, thereby providing a reparative experience (through transferences) that would facilitate the unfolding of self, in SFBT the client’s supposed path to change is to internalize not the therapist’s self-states, but the therapist’s instrumentalities: the perspective of exception finding, solution finding, and curiosity in the service of creating new possibilities for thinking and doing. As we have seen, this also comes with the therapist’s disavowal of problem talk, the past, insight into how the problem functions as part of the psychic and relational economy of the person in situation, a discomfort with psychic pain of dwelling with it long enough to learn something from it. This message essentially is internalized, that is to say, that the person’s imaginary relation to herself/himself as a problem-phobic solution seeker undergoes reinforcement. She/he becomes cast in the desire of the therapist as a competent solution seeker who possesses all the answers already and whose belief in problem talk has kept her/him from realizing her/his potential. The danger is that despite SFBT’s intention to empower the client, this approach risks robbing the client of the opportunity to articulate her/his own truths/voice, dependent as it is on the client’s identification with the therapist. The identification is not with the therapist as a subject supposed to know (as the therapist in this model insists that the client possesses all there is to know already, or even more radically, that knowing is irrelevant to change, thereby short-circuiting the possibility for an idealizing transference), but rather an identification with the therapist as the exemplar of curiosity in the service of leading the clients toward a conception of themselves as powerful and capable of creating solutions without the aid of fantasy, projection, transference. “Transference/countertransference interplays may give us an indication of the nature of distress, which may allow both therapist and client to work collaboratively towards expanding the client’s repertoire of choices of ways-of-being in the world” (Pereira 2010, 8–9). It is a great disservice to people when therapists deny their clients the opportunity to idealize them or hate them as Freud, Lacan, and Kohut knew, to expect from them some knowledge, to hold that place of the “subject supposed to know,” for it is not that therapists actually know, it is that their desire to know acts as a prompt for the client to bring into speech that which has never been spoken, in other words to articulate and symbolize that which resists symbolization (Lacan 2006). In SFBT, the therapeutic conversation becomes shaped by the disavowal of these premises and anxieties. Taking a client’s history, exploring the meaning of the

Critique of solution-focused brief therapy 203 symptom, the idea of repression and its defenses, repetition of dynamics still affectively charged from childhood, these are all ejected from the field. The notions of free association to get at the language of the unconscious, the role of fantasy, and specifically transference/counter-transference are disavowed. Let us listen in on the policy advisers again: All brief service therapies and delivery mechanisms offer therapeutic encounter, instead of assessment, at the first session and then provide a variety of brief service options based on families’ needs. Brief service delivery mechanisms offer therapeutic help from the first contact and make the most of the time with young people and their families. Such services address immediate needs, divert people from waitlists whenever possible and operate on the premise that “all the time you have is now.” (Duvall and Burden 2012, 3) The allusion to “therapeutic encounter” could perhaps be rescued to suggest something along the lines of what I am intimating here, namely, how to provide care, get involved in caring with one’s curiosity and free-floating attention, rather than a fear-based, constrained, formulaic gaze that bends language away from the province of ignorance, defense, transference, fantasy, and psychic conflict. We might imagine that the emphasis on scarcity, “all the time you have is now,” functions to mask the anxiety about possible confrontation and conflict in the intersubjective dimension of therapy, aspects that are essential in fact for “good therapy.” SFBT tends to shift attention away from the articulation of a contradictory and paradoxical psychic economy whose functioning might cast some light on the coordinates of one’s desire and self-process, toward a deployment of language as technique without depth, as an instrument to produce the language effects that will constitute a new subject, a shall we say solution-driven subject, one that is taught to forget and ignore the so-called problem story, the pain, the past, the unresolved hurts, the puzzles, the traumas, through a great act of suppression and substitution. The discursive effect is to incite the subject to speak only of the preferred future, one’s wishes, one’s moments of satisfaction, competences, where one can confirm oneself, where the evidence would mount that one is a good, effective, efficient subject after all. Of course, the abatement of symptoms for the neurotic is temporary, and when the power of the imaginary relation between the therapist and client subsides, when proximity is abolished, when contact is reduced, the ego strength by proxy model of care shows its limits. The effectiveness fades over time, as the research shows, whereas psychodynamic treatment appears to have a longer lasting effect (Shedler 2010).

Servicing If we look at how brief therapy is provided within the mental health field, and examine the logic within specific agencies that dictates which services are selected to respond to which need against the backdrop of scarcity of resources, and the

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perseverance of demand, we find a very curious phenomenon. First of all, there are norms around what counts as a mental health problem and what does not, and what counts as a crisis and what does not, as well as what counts as a disturbance outside of the norm of child and youth psychosocial development and what does not. Referral sources (parents, teachers, doctors, psychologists, psychiatrists) have developed a simple strategy to get access to services when the demand is high and resources scarce. Amplify the problem story! In fact, assessing need is built on the premise that more need gets access to service, and in some circumstances direct service, quicker. The irony cannot be lost on us. SFBT’s central premise is to silence the voice of problem talk, to obsessively seek out strengths, exceptions to the problem, to construct a narrative of the subject as one that needs to know nothing of what ails him/her, in fact is encouraged to forget the language of suffering, of complaint, of demoralization. And yet, to get access to this curious therapy in the context of mental health services today (I speak specifically from first-hand observation in the Children’s Mental Health field) one needs to present as riddled with problem talk. Part of what drives the strategy of amplifying the problem story is the affect of helplessness and anxiety of being confronted with the suffering being for which there is no immediate solution. The child who cannot attend school due to debilitating anxiety, the suicidal adolescent, the traumatized child who explodes at the slightest hint of discord in the playground. The referral sources are pleading actors, pleading on behalf of those who have confronted them with a demand, with a plea of their own, signified by their suffering or perceived “disorder.” The temptation in the face of this is to reduce care to “servicing” (Waddell 1989). We might think of the servicing aspect of mental health services as “doing things for people, with the illusion that needs can always be met through material or practical resources” including therapeutics, like counselling and milieu programs (Waddell 1989, 17). In contrast, “serving” might be conceived not as a subordination to the whim of the other, a gratifier of needs, but rather as a “standing by,” a “walking with” or “witnessing,” involving a presence in the midst of “not knowing” (Waddell 1989); to hold the psychic space, and act as a modulator of pain, by digesting it and not impulsively reaching after solutions and packaged formulations. In other words, to observe, describe, and be with the other without promising any magical relief. When confronted with the immense psychic pain of the other, the brief therapist is faced with a challenge. Do I implicate myself in this pain? How can I be helpful without being engulfed, without letting the problem story devour the session and render my desire for solution finding as a form of caring irrelevant and impotent? How do I listen to what is painful, humiliating, sadistic, horrific, irritating, embarrassing, depressing, confusing, enigmatic, and not hear it as an ethical demand to stand with my client, instead of shuffling her/him away from and toward something else? “According to Messer and Warren (1995), the tendency of SFBT to deflect painful narrative away from problem talk’ to ‘solution talk,’ may be seen as part of a larger cultural issue” (Stalker, Levene, and Coady 1999, 474).

Critique of solution-focused brief therapy 205 At a cultural level we seem to distance ourselves from emotional pain and despair by trivializing the depth and extent of subjective suffering. It is all too easy to accept our patients’ difficulties because it makes our job easier. In fact, our patients undoubtedly pick up on ways in which we cannot hear about or tolerate their pain and accommodate us through pathological reenactments of their early relationships with caretakers who could not contain or tolerate their feelings. As psychotherapists, we will only hear that which we are prepared to bear. We suspect that some brief therapists never hear the full extent of their patient’s suffering. (Messer and Warren 1995, 332) The most direct way to get rid of the anxiety evoked when confronted with the other’s psychic pain, and the plea for relief that it communicates, is to listen but not punctuate or further the other’s speech in the direction that it is alluding to. It is to listen without hearing. It is to shut down a psychodynamic-inspired curiosity about the other’s experience, their speech, their desire, in favor of a strategy of avoidance imbued with the promise of relief, suggestion, forgetting. When solution-focused strategies block the client and therapist from dwelling at the scene of the psychic wound, that is to say, when there is no willingness or ability to abide with and learn from the haunting, care is foreclosed and degenerates to the level of servicing.

Serving Serving, on the other hand, as Waddell (1989) suggests, could imply a different kind of relation. It could paradoxically be an offering of “non-action” (not inaction) as a form of caring. It could involve resisting the fantasy that one could respond to the need as if it were a demand that could be filled completely (Waddell 1989). Serving in the way I am imagining here might come close to the ethical action of care, in that it would offer the hope of development to others, by creating a space for digesting psychic pain as an alternative to evacuating it through somatic symptoms, aggressive outbursts, etc., but it would depend upon a capacity of the helper to tolerate mental pain while keeping speech alive, that is to say, be affected by the other without being infected by the other, or engulfed by the other’s pain. Thus, helpers may yet serve as an example to the other of how their pain might be digested and converted into a form of communication, guided by curiosity that does not promise to take away the pain or the conflict, but rather serves to create a safe space for the client to imagine a thoughtful relation to the unfolding of and response to the predicament. Perhaps in this way psychotherapy may offer a space for subjects to learn to live with what remains unresolved and in this way return to life. Psychoanalyst Steven Grosz (2013, 14) makes a similar point in his usage of the Charles Dickens story A Christmas Carol: [I]f a patient lets me know what haunts her, the thought she knows but refuses to think, my job is to be like one of Dickens’ ghosts: to keep the patient at the scene, to let it do its work.

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Conclusion I have tried to suggest that the action of orienting to the therapeutic encounter as a space where a reflective relationship can develop whereby repressed and traumatic material can be symbolized, and relational dynamics and emotional circuits can be identified in the service of greater awareness and integration, is the kind of care that is sidelined and avoided in SFBT. Rather than help the client stay at the “scene,” SFBT prompts the client to forget and ignore what might already be known at some level, but unarticulated. Work that requires the possibility of duration, if not in fact at least in intention, that is to say, work that requires a faith in the ongoing nature of the encounter as a process, interminable in principle, this kind of work is judged as unethical. The appeal to scarcity of resources and contracted time as an ethical rationale prompts the suspicion that such a discourse may mask a deeper anxiety about transference and confrontation in the intersubjective field of the therapeutic space. If psychotherapy is at its root nothing more and nothing less than the conscious and unconscious intersubjective exchange of word, deed, memory, and desire that occurs between therapist and client, it is critical that a non-instrumental, I am tempted to say here “playful” atmosphere is cultivated, where transference experience is encouraged to emerge and develop, so as to learn something from that which haunts. SFBT employs curiosity as a driving force, but it is a curiosity that is constrained by imperatives that discourage the noticing of that which haunts, of staying at the scene long enough to let it do its work, of getting in touch with the anguish of loss. SFBT promotes itself as curiosity in the service of finding solutions, but it is a curiosity that is not curious enough, a curiosity that only detects what the therapist’s desire is driven to hear, and in this way hypnotically invites the client to identify with that desire, rather than follow the lead of the client’s speech wherever it takes her/him.

References Austad, Carol Shaw. 1996. Is Long-Term Psychotherapy Unethical? Toward a Social Ethic in an Era of Managed Care. San Francisco, CA: Jossey-Bass. Bond, C., Woods, K., Humphrey, N., Symes, W., and Green, L. (2013). “Practitioner Review: The Effectiveness of Solution Focused Brief Therapy with Children and Families. A Systematic and Critical Evaluation of the Literature from 1990–2010. Journal of Child Psychology and Psychiatry 54(7), 707–23. de Montaigne, Michel. N.D. BrainyQuote.com. Retrieved October 14, 2015. www.brainy quote.com/quotes/quotes/m/micheldemo138368.html. De Shazer, S., I. Berg, E. Lipchi, A. Molnar, W. Gingerich, and M. Weiner-Davis. 1986. “Brief Therapy: Focused Solution Development.” Family Process 25(2): 207–21. Dermer, Shannon B., Crystal Wilhite Hemesath, and Candyce S. Russel. 1998. “A Feminist Critique of Solution-Focused Therapy.” American Journal of Family Therapy 26(3): 239–50. Duvall, Jim, and Angela Burden. 2012. No More, No Less: Brief Mental Health Services for Children and Youth. Ottawa: Ontario Centre for Excellence for Child and Youth Mental Health.

Critique of solution-focused brief therapy 207 Government of Ontario. 2011. Open Minds, Healthy Minds: Ontario’s Comprehensive Mental Health and Addictions Strategy. Toronto: Ministry of Health and Long-Term Care. Grosz, Stephen. 2013. The Examined Life: How We Lose and Find Ourselves. New York: W.W. Norton & Company. Farber, B., R. Lippert, and D. Nevas. 1995. “The Therapist as Attachment Figure.” Psychotherapy: Theory, Research, Practice, Training 32(2): 204. Fink, B. 2007. Fundamentals of Psychoanalytic Technique, 1st Edition. New York: W.W. Norton & Company. Heidegger, Martin. N.D. BrainyQuote.com. Accessed October 14, 2015. www.brainyquote. com/quotes/quotes/m/martinheid210962.html. Hollis, J. 1998. The Eden Project, 1st Edition. Toronto: Inner City Books. Iveson, C. 2002. “Solution-Focused Brief Therapy.” Advances in Psychiatric Treatment 8(2): 149–56. Kohut, Heinz. 1984. How Does Analysis Cure? Chicago, IL: The University of Chicago Press. Lacan, Jacques. 1991a. The Seminar of Jacques Lacan, Book II: The Ego in Freud’s Theory and in the Technique of Psychoanalysis, 1954–1955. Translated by Sylvana Tomaselli. New York: W.W. Norton & Company. ——. 1991b. The Seminar of Jacques Lacan, Book I: Freud’s Papers on Technique, 1953–1954. Translated by J. Forrester. New York: W.W. Norton & Norton. ——. 2006. Écrits: The First Complete Edition in English. Translated by Bruce Fink. New York: W.W. Norton & Company. Messer, S.B. and C.S. Warren. 1995. Models of Brief Psychodynamic Therapy: A Comparative Approach. New York: Guilford Press. Pereira, João G. 2010. “Transference and the Therapeutic Relationship—Working For or Against It?” Gruanaliseonline—New Series 1: 1–14. Shedler, Jonathan. 2010. “The Efficacy of Psychodynamic Psychotherapy.” American Psychologist 65(2): 98–109. Stalker, Carol A., Judith E. Levene, and Nick F. Coady. 1999. “Solution-Focused Brief Therapy—One Model Fits All?” Families in Society: The Journal of Contemporary Social Services 80(5): 468–77. Waddell, Margot. 1989. “Living in Two Worlds: Psychodynamic Theory and Social Work Practice.” Free Association 1(15): 1–35.

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11 Rethinking the concept of care Han Zhang

其所厚者薄，而其所薄者厚，未之有也。

(礼记·大学) It never has been the case that what was of great importance has been slightly cared for, and, at the same time, that what was of slight importance has been greatly cared for. (Confucius, The Great Learning)1

The translation of care into a Chinese word yields many different results. As a language that embodies a long history and cultural transitions, different ways of translating the word care bring to our attention the many different usages, forms, and conceptions that the notion of care could take. As more research on care begins to use a transnational framework that examines the often layered and complex relations of care in an era of global migration and neoliberalism, it is useful to rethink the concept of care in a truly transnational and intercultural manner, that is, to treat the boundary between East and West as a discursive space in which differences can be engaged for deep thinking and reflective conversation. The NeoConfucianist philosopher Tu Weiming (1985, 16) aptly describes such a discursive space as the “fruitful ambiguity”: The clear boundaries that define East and West, or for that matter North and South, usually do not provide the necessary intellectual impetus for deep thinking. Rather, the subtle, nuanced differences in between offer greater opportunity for critical scholarship. In this chapter, I will first briefly survey the different ways in which care is conceptualized and operationalized for research. In many studies on care, what is often left unexamined or taken for granted is the particular notion of care, as if it pertains to a universal meaning and practice. I will then try to rethink the concept of care in the context of a qualitative study I co-investigated, titled “Understanding Tensions in Elder Care among Chinese Families Living in Toronto.”2 In the study, we used an intersubjective approach to examine the complex lived experiences of both Chinese elders who live with their adult children, as well as

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adults who live with their elderly parent(s). There were 24 in-depth interviews conducted with both seniors and adult children as a way to understand how the meaning of care is constructed, challenged, and negotiated in an intersubjective relationship. Different concepts of care as formulated in the literature all manifest in one way or another in the 24 stories we collected. However, as I will argue later, there seems to be an impasse in conceiving the concept of care, which is fundamentally abstract and ambiguous, and often unspoken or held in abeyance by both the subjects under the study and by the researchers. How might we interpret qualitative data and narratives in a way that brings to the surface those hidden ethical collisions and tensions that could arrest, engage, and reflect the ambiguity of the concept of care itself? How can we treat a subject’s speech as embodied in values and beliefs, and as an orientation to the notion of care that goes beyond the discourse of the exchange of labor and services, productivity, self-management, and the scarcity of time and resources? I will attempt to analyze the impasse in one of the stories as a beginning to rethink the concept of care as an ethical problem that pertains to the subjectivity and selfhood of the individuals, and as a discourse on the value of life.

The problematization of care as a need One of the most prominent ways of depicting care is to view it as a need—a need by a certain part of the population due to its weakness or limitations, which requires help and assistance from society as a whole in the model of social justice and equity. Not only is meeting the public’s needs the aim of healthcare and the core value of the welfare society, it has also become the dominant ideology for the provision of healthcare in the name of “needs-based” services or “patient-centered care.” On the surface, it seems like the subject who possesses or expresses the need is at the center of the formula. Under closer examination, treating care as a need poses the risks of the concept being appropriated for the planning, management, and allocation of healthcare services and social resources. For example, the need for elder care in China has always focused on the relation between the individual and society at large, rather than on the individual within his or her own family and community. We will examine further why care is not viewed primarily as a need but as a responsibility or obligation in Chinese families under its Confucian influence. Looking at the historical development of geriatric care in the public health system in China, we can see how this formula of care as a need is inscribed in the system’s ideological transformation from elitism to utilitarianism. In China, geriatric care is often characterized as hospital care for elderly Chinese. A study on all admissions of seniors aged 60 and above to the Geriatric Department of Peking University First Hospital in Beijing between 2003 and 2005 showed that 75.1 percent of the seniors were male (Flaherty et al. 2007, 1297). The disproportional gender balance in elder care beneficiaries was linked to the fact that all geriatric departments in university-based hospitals have primarily developed to meet the need for care from retired government officials and workers

Rethinking the concept of care 211 (Flaherty et al. 2007, 1295). Therefore, the need for elder care in China’s healthcare system has for decades been limited to the needs of retired government officials who are seen as entitled to receive the most social benefits from the state. In recent decades, with the increasing number of public and private hospitals in both urban and rural areas, admission to these hospital-based long-term care units has begun to accommodate, and often to be restricted to, another type of need for people with “three nos”—“no ability to work, no source of income, and no family support” (Leung 1997, 92). This implies an ideological shift from an elitist healthcare system to a utilitarian one in which resources and benefits must be redistributed to those who most need them, in this case the disabled, the poor, and the family-less. Leung also mentions that the primary purpose of these units is only to ensure the survival of the seniors, rather than aiming to improve the well-being and quality of the life of the residents (1997, 92). As we can see, in the extreme case of treating care as a need that is prescribed by society to the individual, elder care can be conceptualized as a basic need for survival for those who cannot otherwise afford it. As China struggles to improve its welfare system to accommodate an aging future, the entire world seems to be panicking about an aging society. Numbers, percentages, and statistics about the rapidly aging population worldwide in both media and scholarly literature become the commonly used rhetorical devices to frame the need for elder care as a crisis and social problem. The need for elder care here often remains abstract and elusive, as if the irrevocable force of aging cannot by rescued by any concrete measures other than the translation of the problem into a threat for the present and a haunting reminder of a potential downward slope on the economy, growth, and everything prosperous if we cannot find a solution. The Economist called the aging population “invaders” (“Age Invaders” 2014) as if between now and then there exists a crossing line that marks the beginning of this systemic problem, which is often depicted as a time-bomb with an unpredictable threat to the demand for care. To accompany this quantification of aging as a social problem, the need for care is often described in terms of its size, volume, and economic impact, rather than its specificities and meaning. In such a rhetoric, aging is described as an unstoppable train that poses elder care as a social need that differs fundamentally from other needs because of its irrevocability, incurability, and inevitability. It is a need for which the solution is yet to be found and the ambiguity of which continues to be problematized and presented as an economic problem.

Care as an enigmatic responsibility In cross-cultural literature on elder care, China is often praised for its strong traditional foundation in family support, which functions as a cushion for the public health system. Studies (Ikels 1998; Lai 2010) even try to prove that the traditional Confucian value of filial piety can effectively reduce caregiver stress as if care as a responsibility serves as the best antidote for reducing the burden of the need for elder care in society. The tradition is often recollected as the good of an oldfashioned social value that is being threatened and eroded by modernization and

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its alleged concomitant of individualism. But the praise of the tradition often skims over the question of the quality of the inheritance, seeming more focused on the erosion of what must remain enigmatic. Family and community support are still some of the best assets that China has. Whether it stems from some part of their cultural background such as Confucianism or is a natural part of living in a crowded country, without this “informal” support, the burden of caring for older people on the formal system would dramatically increase. Although the benefit of this aspect of Chinese culture is difficult to measure accurately, and although many believe it is changing, the more China can “use” and encourage the maintenance of this natural resource, the better off it will be in terms of caring for its growing elderly population. (Flaherty et al. 2007, 1299) What fascinates the authors above is the phenomenon and apparent success of family and community support for the elderly in China, an “asset” seeming to work so well that it reduces the need for society to intervene. Here we can see that the concept of care as a need for social support on the one hand, and as a private and individual responsibility one exercises (especially in a family and kinship relation), on the other hand, are put in opposition. This line of thought is also evident in the criteria set by the hospital for admitting geriatric patients—only those without family support are designated as having the need for social welfare. If both society and the family are responsible for taking care of the aged, the family is still considered the primary locus where elder care belongs. The interaction between the informal and formal care system in China points to a structural debate that reaches beyond the impact of the moral constraint of filial piety on individuals. We need to be mindful not to treat the Confucian value of filial piety as an external and forceful moral guide for the individual, but to also look at how this traditional value is appropriated and redistributed as an ideology that produces strong normative power to be exercised by the state and institutions. For example, due to the cultural expectation for family care, many people in China still feel reluctant to seek institutional care arrangements for their elderly parents because they are afraid of being stigmatized as irresponsible children (Zhan el al. 2011). In other cases, some would equate good quality elder care to providing the elderly with abundant financial and material resources. If the absence of elder care becomes equivalent to people with “three nos,” the notion of elder care itself as an ideal form still remains absent in the public imaginary. Nevertheless, the state continues to enforce the importance of family as the primary care domain for the elderly, in a way that demonstrates a strong adherence to the Confucian value of filial piety. Elder care as a family responsibility was legislated and the Law of the People’s Republic of China on Protection of the Rights and Interests of the Elderly was promulgated to define the respective roles of the state, community, and family in providing elder care. Under the legislation, husbands and wives are legally responsible for supporting their parents and

Rethinking the concept of care 213 parents-in-law. The state’s effort to delineate the boundary between elder care as a private and public responsibility further reduces the notion of care to an indisputable private and individual responsibility. Article 10. The elderly shall be provided for mainly by their families, and their family members shall care for and look after them. Article 11. Supporters of the elderly shall perform duties of providing for the elderly, taking care of them and comforting them, and cater to their special needs. (Law of the People’s Republic of China on Protection of the Rights and Interests of the Elderly 1996) Note how the duty of providing elder care in the legislation remains vague without referring to any notion of what constitutes good and ethical elder care. Even under such legislation, the young generation under the one-child policy continues to be the subject of criticism for their detachment from the tradition. The problem here is not about the opposition between the traditional and the modern, or the preservation and loss of traditional value, as many seem to be claiming, because the impasse of the debate lies in the problem of conceptualizing care primarily as a private responsibility that is prescribed and enforced by the state as an external and impersonal duty. The discourse on filial piety points to a contested field where individual responsibility for care and social justice clash. Such a clash is often left unexamined in research that blames modernization, urbanization, and economic prosperity as the cause of a weakened social foundation of family care for the elderly (Sheng and Settles 2006; Cai et al. 1994; Jia 1988; Kwong and Cai 1992; Leung 1997). To put it in a simple way, if we conceptualize care as a private responsibility, one that belongs to the individual, the society starts to incorporate the ideology that it will only be responsible for elder care when the individual fails to be. In this case, if the individual defers the responsibility to society, he or she runs the risk of being stigmatized as being irresponsible. Hence, the failure of elder care is and will always be the individual’s fault. Only within the context of such a logic does the burden and pressure on society for elder care result from the erosion and weakening of the foundation of familial care. The problem of treating care as a responsibility will always return to the question of who is responsible and why, which is a problem of social justice that is inherently complex. But the ruling conception of care is often reduced to a calculation of the number of people available to take upon this responsibility: With the one-child policy reducing family size, more working wives and rapidly growing divorce rates, the pool of potential caregivers has shrunk, affecting both the capacity and the willingness of the family to provide care and support to the elderly. (Sheng and Settles 2006, 298)

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The concept of care is quantified as a need for society to intervene, and formulated as a responsibility that is calculated by the number of individuals. If the number of individuals who are supposed to be responsible decline due to the one-child policy, the responsibility will at some point fall out of the individual’s hands and become a public problem.

The critique of care as the “totality of people-centered work” Previous conceptions of care often use economic and statistical information to justify care’s importance and urgency. Such approaches that treat care as a quantifiable social problem are examples of what Hannah Arendt calls a “communistic fiction” introduced by liberal economists who assume “one interest of society as a whole in economics” (1998, 43). The consequence of the rise of the social is the devouring of the sphere of intimacy—“the intimacy of the heart” that belongs to the private sphere and that has “no objective tangible place” in the world and cannot be localized in the public space with certainty (Arendt 1998, 39). The experience of care, be it pleasurable or burdensome, is something that cannot be represented or rationalized by the laws of statistics. They are meaningful everyday relationships that only disclose themselves in “rare deeds” and not in the “everyday life” captured by the logic of statistics (Arendt 1998, 42). Care as a need and a responsibility still remains at an abstract level and does not touch upon the specificities of practicing, giving, and/or receiving care. The exchange, interaction, and give-and-take of care is the main focus of theoretical and empirical research on caregiving. On this level, studies can be seen as approaches ranging from focus on caregiver burden, to feminist perspectives on identity. Carol Thomas’s (1993) essay titled “De-Constructing Concepts of Care” offers a comprehensive survey of how care to her seems to be conceptualized in sociological, social policy, and feminist research. She recognizes that the concept of care in most sociological research lacks a clear definition and an epistemological status. Not only is the meaning of care often treated as given, but the concept is presented as a partial and fragmentary one, and as an idea lacking a theoretical unity. Based on this observation, Thomas tries to deconstruct the concepts of care as they are used in social research and searches for a unified concept that captures all of its partial meanings. Unfortunately, Thomas’s project at its best produces a uniform but external definition reflecting a neoliberal discourse on care as primarily a laboring activity that is embedded in different social relations of production. Such a construction of the notion of care eventually leads her to conclude that care has no theoretical status, it is “a descriptive concept like ‘housework’ or ‘manufacturing work’ . . . The unified concept of care describes the totality of society’s people-centered work” (Thomas 1993, 666). She breaks down the concept of care into seven conceptual categories: 1 2

The social identity of the carer. The social identity of the care recipient (children, old people, patient, the sick).

Rethinking the concept of care 215 3 4 5 6 7

The inter-personal relationships between the carers and the care recipient (family, friends). The nature of care (feeling vs. activity). The social domain within which the caring relationship is located (public/private). The economic character of the care relationship (paid, unpaid). The institutional setting in which care is delivered (home, hospital, long-term care facilities).

These categories imply that the notion of care is a concrete and specific practice that the “carer” (subject of care) gives to the care recipient (object of care). The practice can be located in a specific social relationship, such as family and friends. In the private domain this type of practice (as she assumes of care) is measured as labor and translated into economic terms (paid/unpaid); in the public domain, such a practice of care is considered as a service. Her only category that implies an engagement with care as oriented and phenomenologically vital is to recognize its residual character as a “feeling.” In exemplifying such externalizations of the notion of care, Montgomery and her colleagues (1985) define caregiver burden as two dimensional: objective and subjective. The objective burden of care refers to the limits and disruptions of care due to external factors, such as finance, time, energy, and privacy. This dimension identifies care as an impersonal and objective activity that requires labor and resources that are external to the subject of care. Splitting the concept of care in such a way into the objective and subjective resembles the Western dichotomy between the body and the mind, and demonstrates an “either/or” approach to care and burden. The subjective concept of care as a feeling is oriented to the idea that giving care produces an emotional response and/or return for the subject. If the feeling is negative, it becomes a burden, which refers to the emotional and affective reactions to caregiving experience (Montgomery, Gonyea, and Hooyman 1985) and such a dimension of care is further divided by scholars into positive and negative feelings of caregiving (Kramer 1997a, 1997b; Ryff 1989a, 1989b). Psychological measures and self-assessment on a point system are commonly used to calculate the level of either positive or negative feelings associated with caregiving. What is problematic with this subjective-objective split is that it always considers care as something external, practical, and descriptive that can be given or taken by a person to another, so that the notion of care itself still remains ambiguous. As Alan Blum suggests in his work on the imaginative structure of the city, such representations of a problem, be it objective or subjective, always “sacrifice the temptation to treat the cliché as a matter which we must decide factually or argumentatively in order to treat it as the surface of an implicit discourse in relation to a problem which remains to be explored” (2003, 193). The problem of care deserves its own theoretical grounding, and should serve as the beginning of a stronger analysis that seeks to work through and bring to life the fundamental ambiguity of the problem, often masked by the clichés.

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From externalization to orientation If we treat the concept of care as something concrete, descriptive, and tangible, something that can be quantified and measured, we run the risk of externalizing it in a way that Arendt (1998) warns as devouring the peculiarity and meaningfulness of such a concept in our sphere of intimacy and subjectivity. Treating care either as an economic problem against the backdrop of productivity or as a means to reproduce our material conditions marks the loss of Arendt’s distinction between labor, work, and action. Care, rendered as a social problem for society, raises important questions about the ethical and moral value of work, rather than its economic value. It forces the state to question the worthiness of public spending and drives caregivers to think about the value of such a willingness, action, commitment, devotion, and even sacrifice. In questioning the value of care, we move from treating care as an external force to conceptualizing it as an orientation. Simmel’s (2010, 1) theorization of our individual life form in the vastness and infinity of the world offers us a model for conceptualizing such an orientation: We are continually orienting ourselves, even when we do not employ abstract concepts, to an “over us” and an “under us,” to a right and a left, to a more or less, a tighter or looser, a better or worse. The boundary, above and below, is our means for finding direction in the infinite space of our worlds. Along with the fact that we have boundaries always and everywhere, so also we are the boundaries. For insofar as every content of life—every feeling, experience, deed, or thought—possesses a specific intensity, a specific hue, a specific quantity, and a specific position in some order of things, there proceeds from each content a continuum in two directions, towards its two poles; content itself thus participates in each of these two continua, which collide in it and which delimits. The fundamental difference between treating care as an externalization and as an orientation lies in the recognition of subjectivity—the transcendental nature of an individual. As we orient ourselves toward some form and order of care, we encounter the boundary and form-giving significance of an otherness. However, we also have the power to overcome that symbolic boundary, to transcend its imaginary order and to become it as we manifest our particularities. Treating care as such an orientation allows us to examine the dialectical space between the subject and his or her relation to the notion of care. Such an approach permits us to see how the notion of care is formed and absorbed by the subject as a symbolic order, and how the subject, through its unique orientation to it, challenges, negotiates, and transcends its border. It is in such a discursive space that we seek to preserve the unity and the differences of the concept of care as it manifests in and through each individual. In the qualitative study we conducted, the objective was to understand the lived experience and intersubjective relations between Chinese seniors and their adult children. Specifically, semi-structured interviews were used as a method to solicit narratives and stories that the subject constructs to make sense of his or

Rethinking the concept of care 217 her own experiences and the meanings they hold. Our research participants were encouraged to freely share their experiences with their family members, especially those involving conflicts and tensions in the caring relationship. We decided to remove the label of caregiver and care recipient in our research planning as a way to avoid prescribing the self-perceived identity of the subject. Indeed, all of our participants identified themselves as subjects in a reciprocal, even if asymmetrical, caring relationship, rather than as sole caregivers or recipients. Due to the openness of our interviews and the nonrestrictive nature of our research questions, we were able to gather rich details of a person’s story, immigration and family history, family relationships, and emotions. The purpose of this chapter is not to conduct a formal analysis of the research data, but to demonstrate the ways in which care can be conceptualized as an orientation that a subject establishes toward a symbolic order that both delimits and gets transcended by the subject.

Ambivalence and intimacy—the story of Mr. Wang Mr. Wang is an 80-year-old senior who moved to Canada to live with his son and daughter-in-law more than 10 years ago. Knowing that the agenda for the interview was to talk about tensions in the caring relationship, he started to express his feeling of ambivalence the moment he sat down: I feel very ambivalent in my heart. Thinking about it . . . I really want to live with my child, but now that we actually live together, I really want to go back (to China). (Interview transcript 2015) After gaining more knowledge about his immigration history and family relations, the interview started to take shape with a focus on understanding his ambivalence, which was a central emotional thread that connected all of his stories together, and an emotional impasse that he himself had trouble coming to terms with. To some degree, he came to the interview hoping to both express his frustration with such a recurring and intensifying feeling, and to reflect on his feeling as a way to understand it better for himself. A couple of times, he tried to address the question of why he felt a certain way to me, hoping that I, as an interviewer, could offer him some answer. It is difficult to summarize his story briefly, but the overall trajectory of his experience echoes that of a large number of Chinese seniors who live with their children, both from our interviews and from other studies on transnational caregiving relations (Mandell et al. 2015). After Mr. Wang’s only son, daughterin-law, and two grandchildren immigrated to Canada, he also decided to immigrate here with his spouse in order to help take care of the family—raising grandchildren and easing some burden for his children. Many years after he lived with the family, his spouse developed dementia and passed away; his children got divorced; he lost custody of the grandchildren; his son lost the house, which was bought with Mr. Wang’s life savings, to the daughter-in-law; and he began to live with his son

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alone. Before he immigrated, Mr. Wang recalled a history of how he took care of everything for his children. He raised his son, supported his education, bought a house for his wedding, and helped him raise his first grandchild in China. After his son immigrated successfully to Canada, Mr. Wang helped his daughter-in-law with all of her immigration planning, including supporting her financially to attend school in Vancouver. In order to help her focus on her studies, Mr. Wang first moved to Vancouver and lived with his daughter-in-law to take care of the grandchildren. He also decided to sell off all of his properties in China and bought a house for his children in Canada. In his words, he saw no value in keeping the assets for himself. Most of the interview was focused on Mr. Wang recalling his unconditional efforts to take care of his son, both before and after his immigration. At the same time, according to his narratives, neither did his son nor his daughter-in-law show any appreciation and respect for his care. On the contrary, his daughter-in-law was very rude and disrespectful to him, describing his help as either too much or not good enough. Nevertheless, the sense of ambivalence did not come from any kind of anger or dissatisfaction with his unappreciative children, but rather from a sense of disappointment and renouncement. He described his initial intention to move to Canada as to help reduce the burden of the family. In his original expectation, as long as he offered his best to take care of the family while he was still capable, his children would for sure take care of him when he became old and frail. But the reality is, now that he is already 80, he is still taking care of his family. After so many years of providing care, he started to feel exhausted both physically and emotionally, and questioned whether his effort was worth it. He already gave up the hope of depending on his son, and he often contemplates whether he should go back to China and hire an hourly social worker to take care of him. The idea that he would rather pay for a stranger to take care of him than burden and trouble his son was very strong throughout the interview. In his words, the intimacy and affection of his family (qin qing) disappeared. He did not know how to describe what he meant by this intimacy, but to him, something fundamental about the family was lost. In a recent study by Nancy Mandell and her colleagues (2015) on transnational family exchanges in senior Canadian immigrant families, they created focus groups with 91 immigrant seniors in Toronto and found very similar trajectories. The elderly parents often offer more and continuous help in terms of financial assistance, grandchild care, and domestic housekeeping to their children as much and as long as they can. These seniors also reject the idea of treating care as a form of labor or work that deserves any kind of compensation. According to Mandell, caring for the family entails a “family-first” ethic, intimate relationships, “an expression of love, nurturing, affection, and commitment [rather] than a set of tasks and responsibilities” (2015, 87). However, similar to Mr. Wang, these seniors often experience feelings of loneliness, burnout, and isolation, while at the same time feeling proud of their efforts. The researchers concluded that these contradictory effects lead the seniors to the feeling of ambivalence when they assess their own lives (2015, 93).

Rethinking the concept of care 219 The different arrangements, situations, and patterns of care in immigrant families are well documented and we can find similar stories in many research studies. However, arriving at the conclusion that many seniors feel ambivalent and have mixed attitudes toward their life choices does not necessarily offer us any insights on the real problem. The way ambivalence is formulated here reminds us of the division of the concept of care as a feeling and an activity. The positive feeling of care (rewards, satisfaction, pride) clashes with the negative consequences of the caring activity (compromised well-being, physical burnout), producing ambivalence as an impasse that separates the nobility of care from its consequential burden. Care and burden are again put onto two opposite axes. How can we rethink the concept of care in Mr. Wang’s case so that we recognize the ambivalence as something fundamental and essential rather than consequential? In other words, how do we consider burden as inherent in care rather than external to it? Heidegger’s ontological concept of care offers us a perspective on treating care as an orientation to life that is characterized as a concern, and on treating burden as a primordial response to the limit of Being. In Being and Time, Heidegger (1962, 224) says, “Dasein’s Being reveals itself as care.” Deriving from a Greco-Roman myth on Cura, who fashions the human being and holds it as long as she lives, Heidegger describes Dasein’s being as care. Dasein’s existence is first characterized as a thrownness into the world, therefore, it is “always also absorbed in the world of its concern” (1962, 236–7). Such a concern not only impinges on Dasein’s own being-in-the-world, but is always also a “being-with-one-another, being with Others” (Heidegger 1992, 7E). Therefore, care captures the fundamental relation of ourselves to other beings in the world in the form of an ontological concern. Heidegger’s existentialist notion of care helps us make the connection between care and burden—the fundamental condition of our being (care) is always already burdened by an orientation to concern. What is Mr. Wang concerned about and how is he oriented to the notion of care? Based on the detailed narratives of Mr. Wang, we can attempt to interpret his story differently and consider his orientation to care as embedded in values about a strong family. Mr. Wang believes in the idea that his role as a father is to provide for the family. The identity of Mr. Wang as the provider and guardian of the family was evident until the end of the interview, where he expressed his final resolution with the feeling of ambivalence: I think, after all, I still cannot go back to China. I still cannot let go of my concern. I cannot let go of my concern (for my son and grandchildren). Maybe till the day when my grandson and granddaughter could strive a path for themselves, maybe then I would feel better. (Interview transcript 2015) The important questions to ask is what qualifies as a family for Mr. Wang; what kind of values does he attach to the idea of a strong family; and what kind of selfhood is implied by these values? When he expressed that the sense of an intimate family disappeared, got lost, and was lacking, what was the imaginative structure

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of a family, or its ideal form, to which he adhered? We can infer from Mr. Wang’s speech that a strong family should have a shared sense of tightness, intimacy, and vitality. It should be a family that strives and aspires to become better. To achieve this is the goal and responsibility of the father. Mr. Wang’s orientation to his family reflects this imaginary order. He has devoted most of his life to this ideal form of family—investing in his son’s education, helping the family achieve a better future in Canada, buying assets, and raising the grandchildren. One wonders whether his background as a highly educated engineer has any influence on his role as a planner and supporter in the family. The imaginative structure of a strong family to Mr. Wang is like a life-long project that drives him and invests him with the desire to provide as much as he can. Therefore, the notion of care is strongly tied to this imaginative structure of an intimate and vital family, and his role as a responsible provider and guardian. However, this imaginary order was undermined by the reality—the divorce of his children, the loss of the property, the distance from his grandchildren, and eventually the estrangement from his son. The vitality, intimacy, and purposefulness of the family deteriorated as time went by and the value of his care slowly lost its ground, meaning, and jouissance. For Mr. Wang, care is burdensome, but when it is oriented to a strong cause, it becomes necessary. People lift weights in order to become stronger; engineers go through tremendous difficulty in order to build something strong. In this case, Mr. Wang’s care was intended to make the family stronger and better, and burden seemed essential to such an endeavor. It was only after his project hit an end did he realize the lack that made the burden problematic, excessive, and detrimental. On the surface of the matter, what puzzles Mr. Wang seems to be the loss of family intimacy, the specificity of which also remains puzzling. But if we think of Mr. Wang as a subject who is oriented to an imaginary order as in Lacan’s imaginary–symbolic–real triad, the ambivalence he feels points us to the fundamental lack of the subject. As Lacan (2002) illustrates in his theory of the mirror stage, language, culture, and social norms—the system of meaning and identity— afford the subject the illusion and identification that resembles the imaginary self, but the very fact that the symbolic order is always other than the self betrays the subject’s pursuit of completeness. The lack in the being of the subject is not created by the loss of something. Rather, the lack is created in the subject’s imaginary form of the self that is conceived as a whole and complete. This fundamental lack manifests itself in the form of desire that reflects both the subject’s pursuit of completion in the imaginary order and the inherent otherness, alienation, and incompleteness in the symbolic order. This brief interpretation of the values Mr. Wang attaches to the notion of family and care attempts to add a new dimension to the empirical findings that often attribute such a feeling of ambivalence to loneliness, isolation, and other social and cultural barriers. It is not meant to reduce the discourse to a highly subjective reading of the story, but rather to bring to attention how a different conception of care could offer us a new interpretation that treats the empirical finding of ambivalence as an analytical beginning rather than as a conclusion and an end.

Rethinking the concept of care 221 The concept of care as an orientation encourages us to think about the subject’s selfhood and understanding of values as the underpinning driving force and desire for confronting the symbolic order of care. Mr. Wang’s idea of a strong family helps advance the analysis one step further beyond the traditional discourse on the symbolic order of filial piety. His ambivalence does not originate from a sense of dissatisfaction for his son’s failure to adhere to the tradition, but rather reflects a struggle with his own identity and the imaginary structure of an intimate and vital family. Mr. Wang’s final resolution with the feeling of ambivalence showed a strong identity as a guardian. Even when the idea of a strong family is no longer there for him, he still chooses to stay with the family because he cannot let go of his concern for it. The subject’s identity and selfhood become significant lenses through which we can attain a better understanding of his or her orientation to care.

Toward an intercultural understanding of selfhood and its significance for care In cross-cultural and transnational studies on caregiving practice and elder care, cultural difference is often formulated in the form of various cultural and social determinants that impede a subject’s ability to provide care. These cultural differences—such as language, community and social support, financial resources, socioeconomic status, traditions and values—are often considered as the primary influences on the political economy of material and care provision in senior immigrant families. Therefore, the subject’s traditional life trajectory is disturbed and displaced by the transnational process, which is often “characterized by mobility, insecurity, separation, and new tasks” (Mandell et al. 2015, 75). In this discourse, the notion of care becomes situated in a family relation that is subject to the objective and external changes in cultural and social contexts. The location of care in the midst of the objective cultural and social displacement invites us to think of an approach that examines the ways in which the transnational subject orients toward these objective influences and social facts, without conceiving the notion of care as a split between activity and feeling. Such a split reminds us of the Cartesian dichotomy between the body and the mind and what Wu KuangMing (1997, 11) calls the “Western theoretico-technocratic mode of dealing with things.” The concept of care as an orientation that a subject establishes toward the imaginary order of care seeks to reveal the impasse between the objective and the subjective dichotomy of care by redirecting it to a discourse of values, selfhood, and identity. Subjectivity under this line of thought does not refer to just feelings and emotions. It is understood as what Bataille (1992, 28) designates as the ground of human existence and describes as a state of “immanence,” like “water in water.” The continuous and undifferentiated immanence describes our fundamental existence as “always already” part of the “objective” thing-world. It is this “relation to their intimacy,” the “deep subjectivity,” that gets lost when human beings introduce the “object” as an exteriority, as something “strictly alien to the

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subject,” and as “the perfect—complete, clear and distinct—knowledge” (Bataille 1992, 29, 33). What we perceive as the objective world will always return to us: “In this end, we perceive each appearance—subject (ourselves), animal, mind, world—from within and from without at the same time, both as continuity, with respect to ourselves, and as object” (Bataille 1992, 31). What Bataille reveals is the fundamental paradox of the Cartesian subject–object dichotomy—we can only know ourselves (subjects) as we see ourselves “from the outside as another” (Bataille 1992, 31). The notion of the fundamental ambiguity, even impasse, between the subject and the object, the body and the mind, is a common problem that appeals to the critical traditions from both the East and the West. Bataille’s (1992) and Simmel’s (2010) notions of ambiguity both acknowledge the potential of human subjectivity to recognize and transcend the impasse and abyss between interiority and exteriority. In formulating care as an orientation, we are essentially speaking of the subject’s relation to the self through the process of thinking, or of what Arendt (1978) calls the silent dialogue of one to oneself. Thinking, according to Arendt, does not refer to the Cartesian subject who tends to project a universal and totalitarian view of the world, nor does it take self-knowledge as its purpose. Thinking should help the subject “dissolve accepted rules of conduct” (Arendt 1978, 192) and prepare the subject for judging particulars without the interference of pre-established universals. In other words, thinking refers to the “non-cognitive, non-specialized sense as a natural need of human life” (Arendt 1978, 191), which precedes judgment and self-knowledge as the primordial dialogue between the self and the soul. The concept of thinking as embodying both the body and the mind is prominent throughout traditional Chinese thought. In Neo-Confucianist thought, reflective thinking is formulated as caring for oneself in the form of self-cultivation, which is an integral part of a person’s quest for spiritual fulfillment. According to Tu Weiming (1985, 57), “learning to be human . . . centers on the self, not the self as an abstract idea but the self as the person living here and now.” The notion of Confucian self-cultivation conceives the subject as both “a thinker engaged in philosophizing” (Tu Weiming 1985, 21) and as a concrete person embedded in ordinary daily existence. And it is because of one’s “situatedness in a particular network of dyadic relationships” that self-cultivation becomes a social and communal act (Tu Weiming 1985, 15). Before a person can establish and take care of a family or a state, he or she has to learn to care for himself or herself first. At the same time, the development of oneself involves socializing with others and harmonizing various kinds of relationships. The social aspect of the subject is integral to self-transformation and his or her inner experience. Therefore, caring for oneself, in the Confucian ethics, is an unceasing dialectical process of “selftransformation as a communal act” (Tu Weiming 1985, 67). Self and other are not in an oppositional relation, but are rather two sides of the same coin. To transcend oneself is to harmonize human relatedness for the purpose of self-care and self-cultivation. Not only does the Neo-Confucianist concept of self-cultivation transcend the impasse between the self and the other, and the subjective and the

Rethinking the concept of care 223 objective, it also offers a perspective from traditional Chinese thought on the importance of selfhood and self-reflection in any caring relationship with the other. The self is constructed as always oriented to another in the form of a social and communal identity and only through self-cultivation—a process that requires thinking and reflection—can one become truly capable to care for the other. I have briefly surveyed different representations of care in the form of a social need, private and individual responsibility, the “totality of people-centered work,” and the objective and the subjective expressions of burden. Through the story of a senior Chinese immigrant father who devoted his life to caring for his family but was struck by a strong feeling of ambivalence that remains enigmatic to him, I try to formulate a subject who was oriented to the notion of care that was driven by a desire to build a strong and vital family. The notion of ambivalence points to the impasse between the notion of care as an activity and its consequential burden. Such an impasse then invites us to formulate a notion of care that treats burden as essential rather than consequential. Simmel’s concept of life as both boundedness and transcendence, Heidegger’s ontological form of care as concern, and the Neo-Confucianist concept of self-cultivation offer us a path on rethinking the concept of care as an orientation to values and selfhood that requires thinking and reflection by the subject in order to give the notion of care itself a stronger form and theoretical grounding.

Notes 1 2

Translation by Legge, J. 1861. The Chinese Classics: with a Translation, Critical and Exegetical Notes, Prolegomena, and Copious Indexes. Hong Kong: Legge. The study was conducted in 2015, funded by the Community Investment Funding Program of the City of Toronto, and coordinated by the Chinese Canadian National Council Toronto Chapter. I served as the principal investigator for the study with Shunxian Ou and Weijia Tan as co-investigators.

References “Age Invaders.” The Economist, April 26 Accessed October 26, 2015. www.economist.com/ news/briefing/21601248-generation-old-people-about-change-global-economy-they-willnot-all-do-so Arendt, Hannah. 1978. The Life of the Mind. New York: Harcourt Brace Jovanovich. ——. 1998. The Human Condition. Chicago, IL: The University of Chicago Press. Bataille, Georges. 1992. Theory of Religion. New York: Zone Books. Blum, Alan. 2003. The Imaginative Structure of the City. Montreal: McGill-Queen’s University Press. Cai, W.M., Y.H. Song, X.Y. Luo, and L.W. Jiang. 1994. “China.” In International Handbook on Services for the Elderly, edited by J. Kosberg, 87–190. Westport, CT: Greenwood Press. Flaherty, J. H., M.L. Liu, L. Ding, B. Dong, Q. Ding, X. Li, and S. Xiao. 2007. “China: The Aging Giant.” Journal of the American Geriatrics Society 55(8): 1295–300. Heidegger, Martin. 1962. Being and Time. New York: Harper. ——. 1992. The Concept of Time. Translated by W. McNeil. Oxford: Blackwell.

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Ikels, C. 1998. “The Experience of Dementia in China.” Culture, Medicine and Psychiatry 22(3): 257–83. Jia, A. 1988. “New Experiments with Elderly Care in Rural China.” Journal of CrossCultural Gerontology 3(2): 139–48. Kramer, B.J. 1997a. “Gain in the Caregiving Experience: Where Are We? What’s Next?” Gerontologist 37(2): 218–32. ——. 1997b. “Differential Predictors of Strain and Gain among Husbands Caring for Wives with Dementia.” Gerontologist 37(2): 239–49. Kwong, P., and G.X. Cai. 1992. “Ageing in China: Trends, Problems, and Strategies. In Ageing in East and South-East Asia, edited by D. Phillips, 105–27. London: Edward Arnold. Lacan, Jacques. 2002. “The Mirror Stage as Formative of the I Function.” In Jacques Lacan Écrits: A Selection, translated by Bruce Fink, 3–9. New York: W.W. Norton & Company. Lai, D.W.L. 2010. “Filial Piety, Caregiving Appraisal, and Caregiving Burden.” Research on Aging 32(2): 200–23. Law of the People’s Republic of China on Protection of the Rights and Interests of the Elderly. (1996). Accessed October 10, 2015. www.china.org.cn/english/government/ 207404.htm Legge, J. 1861. The Chinese Classics: With a Translation, Critical and Exegetical Notes, Prolegomena, and Copious Indexes. Hong Kong: Legge. Accessed October 18, 2015. http://nla.gov.au/nla.obj-81274765 Leung, J. C. 1997. “Family Support for the Elderly in China: Issues and Challenges.” Journal of Aging & Social Policy 9(3): 87–101. Mandell, N., K. King, V. Preston, N. Weiser, A. Kim, and M. Luxton. 2015. “Transnational Family Exchanges in Senior Canadian Immigrant Families.” In Farber, B., R. Lippert, and D. Nevas. 1995. The Therapist as Attachment Figure: Psychotherapy: Theory, Research, Practice, Training edited by G. and R. Cohen, 75–96. Waterloo: Wilfrid Laurier University Press. Montgomery, R.J.V., J.G. Gonyea, and N.R. Hooyman. 1985. “Caregiving and the Experience of Subjective and Objective Burden.” Family Relations 34: 19–26. Ryff, C.D. 1989a. “Happiness is Everything, or is It? Explorations on the Meaning of Psychological Well-Being.” Journal of Personality and Social Psychology 57: 1069–81. ——. 1989b. “In the Eyes of the Beholder: Views of Psychological Well-Being among Middle-Aged and Older Adults.” Psychology and Aging 4: 195–210. Sheng, X., and B.H. Settles. 2006. “Intergenerational Relationships and Elderly Care in China: A Global Perspective.” Current Sociology 54(2): 293–313. Simmel, Georg. 2010. The View of Life: Four Metaphysical Essays with Journal Aphorisms. Translated by John A.Y. Andrews and Donald N. Levine. Chicago, IL: The University of Chicago Press. Thomas, Carol. 1993. “De-Constructing Concepts of Care.” Sociology 27: 649. Tu, W. 1985. Confucian Thought: Selfhood as Creative Transformation. Albany, NY: State University of New York Press. Wu, Kuang-Ming. 1997. On Chinese Body Thinking: A Cultural Hermeneutic. Philosophy of History and Culture. Leiden: Koninklijke Brill. Zhan, H.J., Z. Feng, Z. Chen, and X. Feng. 2011. “The Role of the Family in Institutional Long-Term Care: Cultural Management of Filial Piety in China.” International Journal of Social Welfare 20(Issue Supplement s1): s121–34.

Afterword Care, giving: an ethical critique Stuart J. Murray

Precisely because a living being may die, it is necessary to care for that being so that it may live. Only under conditions in which the loss would matter does the value of the life appear. (Butler 2009, 14) It is essential for moral philosophy—philosophy that embraces social, ethical, legal, economic and public policy aspects—to consider what is new and exceptional . . . But a wise philosophy also looks at what has just become ordinary and taken for granted. The taken for granted may have a greater effect on our sense of who we are, of what it is to be a human being, than amazing achievements on the margins of our existence. (Hacking 2006, 13)

Caregiving is a difficult concept to capture, if, indeed, it will yield to conceptualization. What might it mean to give care? Is it akin to a gift that is mine to give? Is it given freely, without expectation or need of reciprocation? Beneficence directed toward the tendance of mortal creatures? Or is caregiving a vital economy, an exchange? Perhaps it is some persuasion of love? Or is it ultimately a form of benevolent narcissism, projecting myself into the place of the other, and doing unto him or her what I would have done unto me, if, by some twist of fate, the tables were turned? Have I given care when I have followed the “duty to care,” my legal obligation to act reasonably and to prevent foreseeable harm? Few among us would contest that caregiving involves more than the mere administration of medicines, more than mere obedience to law, more than reasonableness or contractarianism. In the terminally ill patient, for example, giving care may mean withholding medicines, or administering others, to alleviate suffering, to hasten death—a mortal economy. In this case we might say that what matters is how care is given, though most I suspect would be dissatisfied to boil this down to the intentions of the caregiver, however “reasonable” they may appear. In giving care, something other than reason strikes us as crucial, and yet we have not quite entered the territory of unreason. And so we struggle in this moment, our language fails us. If giving care is more than simply caring, how is this giving given? How is it “done”? We falter on our metaphors, remain uncertain when we seek to say what we do when we give care, what is given, what received.

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Speaking concretely, I might tell you of my many cares or concerns; that I care about this or that; that I care to do or to be something; or even that I do not care for oysters or turnips. But when I care for other beings, they have solicited my care, my solicitude, and it is in this context that we might begin to speak of care-giving. It is an intersubjective dynamic, though not necessarily a reciprocal one. I can be cared for by others often without knowing it, just as my care for them might be unknown to them or impossible to acknowledge or return (for example, as it can be when caring for someone with advanced dementia). In distinguishing the small preposition for from the preposition to, we must emphasize that my being responsible to someone is not the same as my being responsible for that person. The former implies obedience, whereas the latter opens onto a much wider socio-ethical relation: I am responsible for those contexts and conditions within which that person lives and flourishes—or fails to—even if those contexts and conditions are implicit or unforeseeable. We might then imagine this responsibility in terms of care: we are called to care for the cultural, religious, historical, biomedical, palliative, punitive, correctional, legal, educational, economic, and civic conditions of human being, that is, to care for the very conditions of care-giving, however concrete or capacious they may be. Certainly the list is not exhaustive. Nor does it represent simply the institutional provisioning of care, for we are implicated in the governance of those socio-political and cultural structures that sustain and govern us—structures that lend meaning to living and dying in the particular ways that we do. Hence the ethical demand to interrogate our diverse social contexts, for they frame the terms, the modalities, and the means in and through which care is given and received. As Judith Butler (2009, 23) has formulated it: Our obligations are precisely to the conditions that make life possible, not to “life itself,” or rather, our obligations emerge from the insight that there can be no sustained life without those sustaining conditions, and that those conditions are both our political responsibility and the matter of our most vexed ethical decisions. In what follows, and as a conclusion to this volume, I examine the fraught relationship between care and giving. Specifically, reflecting on the threads of this collection’s various narratives, we are called to challenge the communicative transparency of this relationship as straightforward “caregiving,” and ask what we mean and what we do when we “give” care. As the volume’s chapters demonstrate, caregiving cannot be conceived along the lines of communicative action (see Habermas 1984), for the social expressions of desire and action—care and giving—are far from transparent or self-evident, rational or objective; moreover, caregiving is an interaction between individuals who are often differentially positioned, with unequal or sometimes inexpressible needs. Those in need of care may be at-risk, vulnerable, dependent, ill, or unconscious. Caregiving is from beginning to end embodied, wrought by bodies themselves forged in relations of power and knowledge, history and culture and technology. A relation of power

Care, giving: an ethical critique 227 is, in some sense, the condition of caregiving, when someone appears before me as powerless in relation to me. The chapters in Part I argue that there is an abiding ethical tension between (end-of-) life care and institutionalized forms of caregiving. Institutional and “ethical” demands for Informed Consent and autonomy, particularly in relation to chronic illness or imminent death, are often experienced as acutely violent, reifying an individual who has no choice but to choose, whose “consent” is context-dependent, and who may not be “informed” or willing or able to make sense of statistical risks and information in relation to the promise of life. This power relation calls for a re-examination of the subject of care with respect to institutionalized norms, policies, and laws. Norms, policies, and laws are addressed in the context of social justice in Part II. Here the chapters suggest that if justice is to be “done,” with care, we must attend to the symbolic order, to the socio-cultural iterations of what counts as a good life or death, often tacitly, and how these manifest in taken-for-granted forms of care and social justice. This exhorts us to further study what we take for granted in the social provision of just care, and whether our presumptions and conducts are truly caring and just. Part III addresses some of the realities of giving care in complex cross-cultural contexts, exploring the concrete practices of caregiving, and imagining interventions into these forms. This afterword, then, turns to discourse itself—including its own, and takes up the discursive desires of the volume as a whole—to close by reflecting on the discursive contexts of care in their social and institutional settings. In taking up a Foucauldian understanding of discourse and power, I invoke the ethical critique of this volume to reveal care as a communicative practice that opens us onto a notion of care that exceeds our increasingly technological systems of health and their dutiful “provision” of care as a “service” (see Bubeck 1995, 133). Indeed, to critique the “provision” of care as a “service” is in some sense to critique the transparency of discourse itself. I suggest that ethical responsibility is not just a responsibility to others, but responsibility for them—that is, a responsibility for the very social and institutional conditions and contexts within which care itself can be conceived, ethically enacted, communicated, and taken up. As the various chapters together demonstrate, this suggests an ethical critique of communication and arts—for it is partly in these aesthetic and existential forms that care is given, and through these forms that we forge a critical capacity for an ethics of care.

An ethics of care This volume owes much, implicitly, to a feminist ethics of care that has emerged in recent decades. Many scholars cite Sara Ruddick’s essay, “Maternal Thinking” (1982; see also 1995), or Carol Gilligan’s In a Different Voice (1982) as originary texts. In relation to moral capacities, Gilligan’s empirical psychological research demonstrated that men tend to respond to a more abstract ethic of individual rights and obligations underwritten by duty and justice, whereas women tend to privilege an ethic of care revolving around empathy, relationship, and responsibility—and thus women speak “in a different voice.” An early feminist ethics of care variously

228 Stuart J. Murray built on Ruddick’s and Gilligan’s early work (Held 1993, 1995; Larrabee 1993; Noddings 1984; Tong 1993), mounting a gender-based critique of ethical care (Bubeck 1995; Held 2005; Sevenhuijsen 2003; Tronto 1987, 1993), and more explicitly engaging debates across public policy, social justice, and democratic citizenship (Bacchi and Beasley 2005; Hankivsky 2004; Noddings 2002; Sevenhuijsen 1997; Tronto 2001, 2013). Virginia Held (2005, 9) has argued that, “The ethics of care is a distinct moral theory, not merely a concern that can be added on to or included within the most influential moral theories such as Kantian morality, utilitarianism, or virtue ethics.” Like many other proponents, she theorizes care as a normative value and practice—rather than an abstract, rationalistic template—which extends far beyond the private sphere to encompass not only medicine, but law, politics, international relations, and so forth. Held, among others, advocates for a relational view of care built on trust, interdependence, and a mutual responsiveness to human needs. True to a feminist ethics of care, the contributions to this volume diversely share its critique of liberal individualism and paternalism, but diverge from feminist political and philosophical discourse to offer a more intersectional perspective on the “management” of care in context. This is not to deny that much of the “work” of care continues to be gendered in troubling ways: rather, the contributions gathered here draw widely on cultural studies and a sociology of health and the body to incorporate recent scholarship on socio-legal interventions, autonomy and informed consent, end-of-life, Aboriginal health in the post-colony, chronic illness, and the delivery of (psycho)therapeutic care—particularly for marginalized populations. That is, rather than honing a distinct theory of an ethics of care, each of the contributors to this volume has sought to complicate the relational places of caregiving and the ways that they presume, when they do not reify, a certain kind of subject of care. Caregiving is, then, less about the operationalization of a distinct moral theory; it is played out, rather, among the effects of our theories and theoretical commitments—and often challenges them on ethical and interrelational grounds. More research on the ethics of care is needed, given that mainstream bioethics discourse tends either to presume or shy away from care and caregiving, often presupposing them as natural consequences of our moral theories and commitments. Care, giving: both are metaphors, and yet they constellate around contextualized conducts, often concern a matter of life and death, or, no less importantly, the kind of life or death that one will face. The concepts are not static: together, caregiving implies a shared space and time, experienced and lived ek-statically as a certain spatiotemporal “thickness,” as phenomenologists might say. In other words, the act of caregiving takes place—often in places that are ordinary and taken-for-granted: homes, streets, communities, clinics, hospitals, hospices, schools, prisons. These socio-institutional settings are not neutral, for better or worse. Indeed, sometimes institutions strive to mitigate human partiality, and work toward the impartial delivery of care, whereas other times impartiality can be experienced and communicated as indifference. For all their ordinariness, these institutions can be structurally alienating in the diverse ways that they frame the terms of care

Care, giving: an ethical critique 229 —as cultural, religious, historical, biomedical, palliative, punitive, correctional, legal, educational, economic, civic—and inform what it might mean to give care, ethically, across these diverse frames of reference. In a rhetorical sense they are “common places” that tacitly structure meaningful discourse (see Aristotle 1975, 1358a) and experience. We might say that they furnish us with a grammar of social worlds: the terms, the modes, and modalities in and by which care can be given and received. Said another way, we might imagine these places as “technologies” in their own right—places of technique that orchestrate and oversee a technē tou biou and technē tou thanatou, an art or skill of living and dying. Not quite the territory of unreason, there is something here that nevertheless refuses to yield to the reasonableness of utility, logic, economics. As the contributions to this volume variously attest, there is some sense in which these technai are not mere instrumentalizations of knowledge or routinized “best practices,” but open us instead onto an art—and an ethics—of care. And such an approach opens possibilities for, in Held’s (2005, 166) words, “not only transformations of given domains— the legal, the economic, the political, the cultural, and so on—within a society but also a transformation of the relations between such domains.” In the epigraph above, Ian Hacking suggests that moral philosophy ought not simply to concern itself with marginal new technologies, however amazing or captivating they may be, but to take seriously those technologies that have become just ordinary and taken-for-granted. While new biotechnologies, such as genomic medicine, give rise to important philosophical debates (as they should), Hacking is speaking here about surgeries and other quotidian forms of body-engineering that have become increasingly routine and normalized: “hip replacement, skin grafts, corneal implants, stents, organ transplants, as well as regulators such as pacemakers” (2006, 13). Hacking proposes that, thanks to such routine medical interventions, we have once again become Cartesian—not so much because we believe in an immaterial soul, but because “we now treat the body as an assemblage of replaceable parts, a veritable machine, exactly what Descartes said it was” (2006, 13). Organ transplantation and brain death, he argues, are emblematic of the biomedical and biocultural shift toward a mechanistic understanding of life and death, in which we see our own bodies and the bodies of others and not least, cadavers—as little more than assemblages of spare parts to be replaced, enhanced, or harvested. This is a Foucauldian insight, suggesting a new Cartesianism, and a vantage from which we might finally declare, “the soul is the prison of the body” (Foucault 1977, 30). We have, in other words, been “disciplined” by medicine and biotechnology: we are no longer ghosts in a machine, as Descartes once imagined us, but machines that function within—and by virtue of—the ghostly apparatus of medical science and law, from biotechnologies and persistent and seductive discourses on “life,” to vast socio-legal and medical infrastructures that subtly advance their own moral orthopedics and inculcate their own conceptual limits to life and personhood. They have changed our sense of who and what we are— what it is to be a human being, and how to be the being that bears this name. Along with a new Cartesianism, then, a new soul:

230 Stuart J. Murray This real, non-corporal soul is not a substance; it is the element in which are articulated the effects of a certain type of power and the reference of a certain type of knowledge, the machinery by which the power relations give rise to a possible corpus of knowledge, and knowledge extends and reinforces the effects of this power. (Foucault 1977, 29)

A new soul Under the aegis of a new Cartesianism, an ethics and art of care must attend to the socio-institutional infrastructures—the conditions, the machinery—in and through which the ordinary, and the amazing alike, occur. These institutions are perhaps the most ordinary and taken-for-granted “technologies” of all. Social and institutional forms act as agents (sometimes called “agencies”) that enable or thwart the moral agency of those who give care as much as the moral agency of those who are said to receive it. That is, as an under-theorized moral framework they operate as a meta-ethic (to be clearly distinguished from a meta-ethics), tacitly informing us not only what it is right to do but also what it is good to be. Professional bioethics offers little guidance in this domain. Indeed, bioethics itself has been institutionalized, and in the process has arguably lost much of its critical impetus as it has been subject to the hegemony of biotechnology, pharmacology, and the taken-for-granted legitimacy of biomedicine (see Murray and Holmes 2009, 1–11; Stevens 2014, 3–6). This calls for a critique of traditional or mainstream bioethics, which tends to presume the old Cartesianism, locating moral agency and autonomy within an immaterial soul, a mind, or some other interiority, the seat of rational personhood. In this view, the autonomous agent is imagined to have sovereign propriety over his or her body, a ghost in a proprietary machine—and sometimes a broken machine at that. Critical of the “disciplinary” power of conventional bioethics, Margrit Shildrick (2005, 3) has argued: “the discipline has effectively duplicated the master discourse and maintained the split between a secure sense of the transcendent self as moral agent, and a more or less unruly body that must be subjected to its dictates.” And yet we might say that “care” promises to cut through these bioethical conceits, this binary logic, in the very manner in which it is given. If we have ushered in a new Cartesianism, as Hacking suggests, by virtue of the ways in which we have come to understand our bodies, we must look beyond the “new body”—a provisional assemblage of spare parts, a machine— to understand an ethics of caregiving. That is, if caregiving is embodied, it is not quite this body that is the subject of care. There is something more, something soulful, we might say. But the “new soul” is an equally peculiar creation: it is at once the articulation, the effect, of institutional power-knowledge, regulated in part by social and institutional structures or “technologies,” and, somewhat paradoxically, the manifestation of a hyper-individualism driven by self-interest and personal responsibility. It “massifies” populations biopolitically as much as it “individualizes” the subject in a disciplinary way (see Foucault 2003, 242–3). To parse this paradox, I would like to turn briefly to Foucault’s understanding of

Care, giving: an ethical critique 231 modern Western power, which he describes in this respect as both totalizing and individualizing—a “sophisticated structure,” he writes, “in which individuals can be integrated, under one condition: that this individuality would be shaped in a new form, and submitted to a set of very specific patterns” (2000, 334). Foucault proposes the term “conduct” as a way to better understand the paradox of the new soul and the manner in which it is managed or governed: “the equivocal nature of the term ‘conduct’ is one of the best aids for coming to terms with the specificity of power relations” (2000, 341). In an earlier lecture at the Collège de France, Foucault elaborated as follows: Conduct is the activity of conducting (conduire), of conduction (la conduction) if you will, but it is equally the manner in which one conducts oneself (se conduit), the manner in which one lets oneself be conducted (se laisse conduire), the manner in which one is conducted (est conduit), and finally, in which one finds oneself behaving (se comporter) under the effect of a conduct (une conduite) that would be the action of conduct (conduite) or of conduction (conduction).1 (2007, 193; translation modified) This is a complex sentence to parse. “Conduct” and “conduction” are terms that purposefully trouble the rational agency of the one whose conducts or comportments are at issue. The grammatical subject is maddeningly displaced, and along with it (him or her), the conceits of (his or her) autonomous agency. In a straightforward sense, conduire is a transitive verb, meaning simply “to drive,” “to lead,” or “to conduct,” and in this sense it takes a grammatical object—a car or an orchestra, for instance. But significantly, it is also an intransitive and reflexive verb, se conduire, the agency of which is not—or only obliquely and conventionally—located in the subject or speaker who is also the object of that action or utterance. “On se trouve se comporter,” one finds oneself behaving, reflexively, under or as the effect of conducts and conduction—“finding oneself ” providing an additional distanciation and a spatial metaphor that is omitted in the published English translation. The electricity metaphor operates here in French, as in English: it is a matter of conduction, the subject is a conduit, we say in English (in a certain Marxian vocabulary), part of a wider circuitry that is not of the subject’s design. As a conduct of souls, then, we might speak of an aesthetics of existence, the way we find ourselves unreflexively going about our business, rather than conforming to a set of delineated rules or procedures: conduction is normative, but its terms are not necessarily explicit—they are lived out “within a more or less open field of possibilities” (Foucault 2000, 341). “More or less,” of course, meaning that the game is somewhat rigged in its “flexibility”; it is “managed,” as we shall see below. It is worth noting that Foucault’s first mention of “conduct” refers explicitly to the “conduct of souls,” the “least bad” translation he could devise for the ancient Greek notion of oikonomia psychōn, where oikonomia or “economy” derives from oikos or “habitat,” and refers to the household. In Aristotle, oikonomia is typically

232 Stuart J. Murray rendered as “household management,” and expressly refers to managing the relations between the members of a Greek household: master and slave, husband and wife, father and children (see Aristotle 1957, 1253b). These are political relations in the microcosm of the family, relations concerning the rightful conduct of each toward the others, the economy of souls. In the Christian context, this concept will morph beyond the prosperity or wealth of the well-managed household toward the salvation of souls. But it is in this private sphere, the oikos, that we find a prototypical or early “institutional” form of care, which is why many feminist scholars of the ethics of care have sought to theorize familial relations (typically from a maternal perspective). Foucault struggles in his translation of oikonomia psychōn: he is dissatisfied with the “management,” “government,” or “regimen” of souls. He prefers the ambivalence of “conduct.” And in so doing he problematizes for us what we might call a psychic economy (from psychē, “soul”) in relation with the political economies of care we find at work across our cultural, religious, historical, biomedical, palliative, punitive, correctional, legal, educational, economic, and civic institutional frames of reference. In a by now famous passage, Foucault (2000, 341) defines modern Western power as follows: “The exercise of power is a ‘conduct of conducts’ and management of possibilities.” In other words, the exercise of such power is indirect, mediate, and not a matter of individuals’ consent. “Instead, it acts upon their actions: an action upon an action, on possible or actual future or present actions” (Foucault 2000, 340). We can begin to glimpse here, then, the manner in which social and institutional contexts of care, as I have been discussing, are a matter of framing something we might call the soul—something that appears to arise spontaneously, interiorly, as immanently individual, but which is, rightly said, the effect of a particular economy or oikonomia, the effect of a particular form of pastoral power, a “conduct of conducts,” managed by means of often diffuse customs or nomoi. Today, neoliberal forms of governance act in this way, to seize upon and conduct the conducts of individuals and to territorialize and incentivize a field of possible actions and goods. This spirit is captured best, perhaps, by former British Prime Minister Margaret Thatcher, when she said, succinctly: “Economics are the method. The object is to change the soul” (1988; quoted in Dardot and Laval 2013, 263). We might say then that particular social and institutional “agencies” conduct or orchestrate a set of possible relations under the aegis of “freedom.” Individual subjects are governed by and through the idea of freedom, as Foucault has argued, but also, I would add, through freedom’s correlative affect of care, and the management of caregiving. I am suggesting here that the affect of care is epiphenomenal, a sentimentality produced and sustained and even demanded by a reigning discourse—it is, in other words, a soulful effect that is taken as cause or origin of subjective care-giving. Care is given “freely,” as if from some interior and private part of the self, and yet it is given within a field of possible actions that are in some respects tacitly prescribed and regulated in advance. It is no surprise, then, that the “soul” has gained tremendous currency in our neoliberal present, by proponents of neoliberalism, such as Thatcher, as well as by its wouldbe critics (e.g., see Rose 1989).

Care, giving: an ethical critique 233

Neoliberalized social and institutional forms I shall presume that readers are familiar with the basic tenets of neoliberalism that have become hegemonic in Western states since the early 1980s. Henry A. Giroux summarizes: “Neoliberalism is a philosophy which construes profit making as the essence of democracy and consuming as the only operable form of citizenship” (Giroux and Letizia 2012). In recent years we have borne witness to the erosion of the social welfare state, the rise of transnational corporate oligarchies, the deregulation of markets, the casualization of labor, rampant militarization, the commodification of “career-focused” education and the instrumentalization of human knowledge, along with the progressive privatization of healthcare in Canada and the United Kingdom, for example. Naomi Klein (2008) has dubbed this “disaster capitalism,” where market-based logics are mobilized to exploit catastrophes, either natural or man-made, from Hurricane Katrina to the global economic collapse of 2008–9. Neoliberalism valorizes competitiveness and entrepreneurialism, where, through a particular onto-logic, individuals are meant to conceive of themselves as “human capital,” competitive entrepreneurs in a free market—and to embrace the free market as the guarantor of their individual freedom. And there is, as well, the “communitarian” iteration of neoliberalism, where “community” is invoked and mobilized in the service of human capital. As Foucault (2008, 230) describes it, “all the problems of health care and public hygiene must, or at any rate, can be rethought as elements which may or may not improve human capital.” In the social sphere, neoliberalism involves extending the economic model of supply and demand and investment–costs–profit so as to make it a model of social relations and of existence itself, a form of relationship of the individual to himself, time, those around him, the group, and the family. (Foucault 2008, 242) The neoliberal state is both totalizing and individualizing in a particular manner. In Giroux’s words again: Neoliberalism’s rigid emphasis on unfettered individualism, competitiveness and flexibility displaces compassion, sharing and a concern for the welfare of others. In doing so, it dissolves crucial social bonds and undermines the profound nature of social responsibility and its ensuing concern for others. (Giroux and Letizia 2012) Neoliberalism represents a new form of governmentality. The socio-institutional frames of reference I mentioned above—cultural, religious, historical, biomedical, palliative, punitive, correctional, legal, educational, economic, and civic— functioned somewhat independently or even at odds during the nineteenth and most of the twentieth century. As Pierre Dardot and Christian Laval (2013, 259) discuss in their recent book on neoliberalism, “The utility principle, whose homogenizing

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vocation was explicit, did not succeed in subsuming all discourses and institutions, just as the general equivalent of money did not succeed in subordinating all social activities.” Today, however, “the neo-liberal moment is characterized by a homogenization of the discourse of man around the figure of the enterprise” (Dardot and Laval 2013, 259). We are no longer dealing with more or less discrete “disciplines” that work variously to shape “docile bodies” in their particular social spheres. The institutional methodology now reflects a more coordinated set of techniques structured ideologically around enterprise and entrepreneurship. It is not that these institutions have been centralized under one authority or sovereign power (in this case we might more effectively revolt). The mantra of neoliberalism is less government, not more. Their fusion is not just ideological but “conductive” praxis. From education to healthcare, the goal is total self-involvement and selfactualization. The psychic economy of the neoliberal subject must be selfinterested, innovative, flexible, marketable, and normatively invested in his or her health and “wellness” as an on-going project. We might say that caregiving is subsumed by this economy; care becomes a mode of affective compliance, submission to the narrow goals of neoliberalism, on its terms; care providers are encouraged to think of themselves as entrepreneurs offering or selling a service. They must take pride in their efficiency and “outcomes,” emerge as “leaders” and “champions,” according to the neoliberal Newspeak. For those of us who rely on healthcare, we are persuaded, educated, seduced to embrace self-care or self-management, as it is sometimes called. The lie is that this is “empowering” and respects the autonomy of the individual. In practice, it might mean that you are sent home after your surgery with Xeroxed directives on the in-home removal of your catheter. Health Canada (2004), a federal government agency, began a widespread self-care campaign in the 1980s: Self-care [is] broadly defined as the decisions and actions individuals take in the interest of their own health . . . Self-care can also be considered as an important determinant of health, concerned with the development and use of personal health practices and coping skills. Or we might look to the World Health Organization (WHO) (2014) for similarly neoliberal language in its individualizing definition of mental health: Mental health is defined as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community. What these descriptions share is the overarching responsibilization of the subject within a totalizing regime: the responsible subject is the consumer who is equipped to harness and deploy the expertise of the positive sciences (medicine, psychiatry, but also economics, statistics, etc.) in the self-management of his or her risk, health, and well-being (see Miller and Rose 2008, 199–218).

Care, giving: an ethical critique 235 “Life coaching” is one recent incarnation of the self-care movement, infecting the private and the public sectors alike. For over a decade, the University of British Columbia (UBC) has offered free life coaching to its staff and faculty through its Human Resources department (www.hr.ubc.ca/coaching/). It is claimed that this is the first program of its kind for a university. The educational Ideological State Apparatus (ISA), as Althusser called the education sector, is no longer a privileged site of resistance and class struggle: we teach compliance and conformity to teachers who teach, and model, the conduction of compliance and conformity. UBC’s coaching website touts an “Individual Experience” for participants, and the program selects coaching “interns” from those who are mentored to become life coaches who return to campus to coach other staff and faculty members—an “individual” experience in the service of “communitarian” ideals. And there are incentives for becoming a coaching “intern”: faculty, for example, will receive release from teaching duties in exchange for coaching others. The upshot of the program is emblematized in one of the coaching blogs on its website: “It’s about helping people understand they have the answers within and discovering a small change that can act as the lever for even greater change.” The message is that there is nothing wrong with the institution’s culture or with its conditions of labor: the problem is within you, and it is your responsibility to fix it, yourself, and to manage your relations with your “clients” or collaborators, superiors or subordinates. You are enjoined to be flexible, to craft a “resilient self” (Henderson and Denny 2015). This culture of self-care and “wellness” transfers the burden of social, political, and ethical structures onto the individual. Critique becomes risible: we as a community are discouraged from addressing our social and collective conditions of work or life. Indeed, work and life become indistinguishable, increasingly integrated. In the words of Dardot and Laval (2013, 263), the neoliberal subject must constantly strive to be as efficient as possible, to appear to be totally involved in his work, to perfect himself by lifelong learning, and to accept the greater flexibility required [e.g., austerity measures] by the incessant changes dictated by markets. The glossy flyers in faculty mailboxes celebrating work–life balance are little more than a public relations exercise coordinated by some new Orwellian-sounding management department. To be clear, I am unwilling to conceptualize care under a general theory of economic management and service provision. I think it is safe to say that this volume’s contributors share such a view: each chapter represents a focused study that intervenes to problematize a particular context of care, and seeks to do so in a language that is critical of the “common places” that inform contemporary discourse. Indeed, it is unclear to me how a general theory—no matter its provenance—might rescue a socially just understanding of caregiving from the tentacles of our neoliberal social and institutional structures and “technologies.” Such a theory may well, in the end, prove overly prescriptive, positing care in terms of some abstract “content,” and an ethics of care as a set of moral guidelines

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or derivative “codes.” These are of course sometimes useful, even necessary, to ensure that someone’s needs are met, and yet a single-minded implementation of evidence-based “best practices,” for example, can undermine the quality of care one receives (see Holmes et al. 2008; Murray et al. 2007). Under a general theory of best practices, the subject of care—the one who gives as much as the one who receives—seems lost to the economies of exchange and managerialism. In other words, we are apt to miss a critical component of caregiving. This something “extra” is no thing, and it has gone by many names in as many ontologies, from Christian “soul” and Kantian “respect” to liberal, humanist, and rights-based personhood discourses that have variously propped up the value of identity, personal autonomy, and agency. These remain spectral and symbolic, however, insofar as they resist a clear conceptualization or concrete context: they are, rather, social and institutionally sanctioned forms. And perhaps there is good cause to be wary of such grands récits (Lyotard 1984)—“master narratives” in the service of a bourgeois symbolic order, policing the permissible forms of social and ethical life.2 Instead, we might approach the critical, even precarious, dimension of intersubjective caregiving somewhat more obliquely. In Precarious Life (2004), Judith Butler asks what makes a life grievable, what it might mean for its loss to matter—for this is the condition of care. One must wonder whether such a question could be asked within a neoliberal frame, and if so, what sorts of answers, conducts, or cares neoliberalism could foster. “Freud reminded us,” Butler writes, that when we lose someone, we do not always know what it is in that person that has been lost. Sometimes when one loses, one is also faced with something enigmatic: something is hiding in the loss, something is lost within the recesses of loss. (2004, 21–2; see also 2009, 1–32) In the end, this “something” is perhaps no knowable thing, and is not quite something the subject “has”: rather, Butler argues that grief is not a privatizing experience, but instead brings “to the fore the relational ties that have implications for theorizing fundamental dependency and ethical responsibility” (2004, 22). The “content” or particular dimension that makes a life grievable is not effectively knowable by the subject because that subject is constituted relationally, and this is not something that you or I singularly “have” or possess—“it precedes the formation of ‘I’” (Butler 2004, 31)—but rather, something that we share. Each of us is constituted politically in part by virtue of the social vulnerabilities of our bodies—as a site of desire and physical vulnerability, as a site of a publicity at once assertive and exposed. Loss and vulnerability seem to follow from our being socially constituted bodies, attached to others, at risk of losing those attachments, exposed to others, at risk of violence by virtue of that exposure. (Butler 2004, 20)

Care, giving: an ethical critique 237 For our purposes we might find in this place, at this moment, a condition of caregiving constituted not by what you or I possess, but in the manner in which we are dispossessed, each by virtue of the other, exposed and vulnerable. But this is, most emphatically, not to cede all claims to my body or to abandon outright the language of autonomy, rights, and self-determination; however, nor is it to cede to the hegemony of resilience and self-care discourses that frame personal autonomy, rights, and self-determination in the particular ways that they do. It is, rather, to complicate the contexts in which these words are uttered and to examine the conditions of their utterance, their reception. One suggestion might be that caregiving takes place at the limits of my secure self-possession, and when we turn to the constitutive discourse on care, in a moment of ethical reflexivity, we might allow ourselves to become unmoored from the socio-institutional conduction of our conducts, from our roles, and to open ourselves to the other in need, to hear his or her solicitation, and to respond in a manner that is unburdened—in relative terms, of course—from our usual codes of conduct. I take this as Butler’s point, that dispossession at the limits of discourse establishes human intelligibility (2004, 35), rather than the other way around, or rather than firmly situating our sense of who we are, of what it is to be a human being, in that discourse. The discursive relation is merely normative and regulatory: it is seductive rather than causal or altogether totalizing. In very concrete terms, then, we might imagine caregiving at the horizon of what is speakable, spoken by me as a powerless petition for care but in words I do not fully possess or control. In Foucault’s (2000, 336) terms, we might propose: Maybe the target nowadays is not to discover what we are but to refuse what we are. We have to imagine and to build up what we could be to get rid of this kind of political “double bind,” which is the simultaneous individualization and totalization of modern power structures. The “double bind” is of course ethical, as well as political. In his late work on ethics, Foucault conceives of this as the work of the ethical subject in relation to his or her subjectivation—an exercise or askesis in which the self struggles to get free of itself, to stray from itself (Foucault 1986, 8), which is to say, in the activity of thought and in our practices to seek some critical distance from the social and institutional identities in and through which our conducts are conducted. As Foucault (1986, 26) writes, “there are different ways to ‘conduct oneself’ morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of this action.”

Coda: care-giving in context The proposal here, if it were “propositional,” is not to eradicate the social and institutional vectors—we might call them “conduits”—of power, as if we could break free once and for all to inhabit a utopian sphere of communication and action, free from constraints and coercion. The specific problem is, as Foucault (1997,

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298) formulates it, “to acquire the rules of law, the management techniques, and also the morality, the ēthos, the practice of the self, that will allow us to play these games of power with as little domination as possible.” We must say then that caregiving takes place in and by virtue of its social and institutional common places—within a set of coercive but sometimes enabling constraints, technologies, and discourses, or perhaps alongside or even despite them. This is the reality. If domination, understood in a broad sense, is an unavoidable risk or even intrinsic to care-giving as a relation of power, to minimize domination might itself constitute a caring practice or counter-practice. This construction, “to minimize domination,” sounds much like a “negative” practice of care, and yet it is nevertheless woven into the more “positive” (but not positivist) practice of the subject’s ethical work on him- or herself—as the ethical subject of this action. To be the ethical subject of one’s actions calls for a particular relation to oneself, which Foucault examined in his late work on the ancient Greek epimeleia heautou, the “care of the self.” This relation of care, a self–self relation (auto to auto), must be sharply distinguished from self-care or self-management, as discussed above (see also Murray 2007). It is an ethical relation that bears upon my ēthos, my individual “character,” rather than on ethos or “habit.” This is not a relation of propositional knowledge and bears little resemblance to the tradition of Cartesian self-doubt. Reading Plato’s Alcibiades I, Foucault points to the Socratic conception of epimeleia heautou as the care of one’s soul, rather than the care we might take of our wealth or our reputation, and so forth. Care of the soul is figured in the Socratic texts as a relation of khrēsis or “use”—what we do with the soul, how we “use” it. Foucault (2005, 56–7) clarifies: So you see when Plato (or Socrates) employs this notion of khrēsthai/khrēsis in order to identify what this heauton [self] is (and what is subject to it) in the expression “taking care of oneself,” in actual fact he does not want to designate an instrumental relationship of the soul to the rest of the world or to the body, but rather the subject’s singular, transcendent position, as it were, with regard to what surrounds him, to the objects available to him, but also to other people with whom he has a relationship, to his body itself, and finally to himself. The “use” or, we might say, “utility” of the ethical self-relation is most emphatically not instrumentalizing. Khrēsis is not a relation of rational knowledge, nor is it simply the use of a tool or instrument. Foucault insists on a more polyvalent reading of khrēsis: an orienting attitude, a conduct, disposition, or comportment that characterizes my particular ēthos. This is not, then, the free agency of an autonomous liberal subject. Foucault’s classical examples, drawn from Plato, take the “use” of the passions and of anger (epithumiais khresthai and orge khresthai). We do not “use” our passions for something, we do not “use” our anger—rather, we “give way” to them, somewhere between mastering and submitting to them, as the occasion and context demand. So, too, with the chresis aphrodision, the use of one’s pleasures. So, too, when we “use” a horse: good

Care, giving: an ethical critique 239 horsemanship requires a listening, a mutual relation with the horse. You cannot just do with it as you please. And so, too, again, when we “use” the gods: when we petition the gods for something, we do so by knowing how to be a proper supplicant, knowing how to ask, what to ask, and when. My suggestion, in closing, is that we might adopt an understanding and a practice of epimeleia in the context of our neoliberal “management” of care—to conceive caregiving as an activity that resists the contemporary conduct of our conducts. In this, caregiving might arise as a counter-conduct, a “struggle against the processes implemented for conducting others” (Foucault 2007, 201). It is to say, perhaps, simply, that we do not wish to give care—or to be cared for—in this way and by these means; or, we do not wish for our care to be administered by this system of truth, under these relations of power. The ambiguous reflexivity of an intransitive “conduct” may open for us a more livable space in which to question our ethical self-relation, and our conducts, for those contexts in which care is petitioned. This is, in part, the artful work of language, intervening—as I believe this collection does—to problematize and to re-imagine a caregiving ēthos, to speak and to conduct ourselves otherwise than we sometimes, and perhaps too often, do. Care, giving: both are metaphors, and yet their relation is at issue in how we read, or hear, the comma that separates these terms—whether we understand them together as straightforward “caregiving” or are obliged to trouble their relation, and to occupy ourselves that moment of hesitation, in-between. This calls for an art and an ethics of care that works, carefully and artfully, to transform our “common places” and to invent and to employ another grammar of our social worlds, new modalities of struggle and resistance. We might, then, for a time, be compelled to imagine care as a dangerous or disobedient practice that responds to its contexts, and refuses to lose sight of them, in the face of authority and the raison d’état.

Acknowledgements/dedication In his introduction to this volume, my colleague Alan Blum briefly mentioned the care that attends the practices of writing, reading, and representation. This was not far from my mind as we curated this book and as I sat down to write an afterword. Writing is a lonely task, often wrought by care, wherein we imagine an interlocutor, a dialogue, and write so as to invite responses from readers we may never see or know. One writes as one gives, sometimes, without expectation, but certainly not without hope. In a mad moment of writerly solitude, I decided to post an early draft of this afterword to the scholarly social media site academia.edu, inviting readers’ comments and criticisms. It was for me a social experiment, of sorts, and I dutifully “tagged” my draft essay so as to appeal to the widest possible readership (bioethics; governmentality; critical bioethics; the ethics of care; health and social care; feminist bioethics). I had few expectations, and I must confess, I was even somewhat cynical. Academia.edu is undoubtedly part of the for-profit neoliberalization of scholarly research. Not only does it publicize our work, it organizes and quantifies it according to various metrics and

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measures, encouraging a spirit of competitive entrepreneurialism. And yet, despite—or indeed, by virtue of—this socio-institutional infrastructure, dozens of scholars overwhelmed me with their generosity. They read and commented with care. The vast majority of these people I have never met, and probably never will. And I began to think that even here, in the vast anonymity of the Internet, despite the odds, suddenly I was the recipient of care, and my text came to life. This strikes me as an apt metaphor for the ways that caregiving can and does take place, often despite—or even by virtue of—the constraints of our neoliberal and biopolitical institutions. There is hope. And it is to these readers, and others like them, that my words are dedicated with gratitude.

Notes 1

La conduite, c’est bien l’activité qui consiste à conduire, la conduction si vous voulez, mais c’est également la manière dont on se conduit, la manière dont on se laisse conduire, la manière dont on est conduit et dont, finalement, on se trouve se comporter sous l’effet d’une conduite qui serait acte de conduite ou de conduction. (Foucault 2004, 196–7)

2

If, as Lyotard suggests, the postmodern condition was meant to herald the end of grands récits or meta-narratives, neoliberal ideology has furnished us with our own pernicious “emancipation narrative,” all the more powerful and seductive because it appears to arise from individual responsibility, freedom, and desire.

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Rose, Nikolas S. 1989. Governing the Soul: The Shaping of the Private Self. London: Routledge. Ruddick, Sara. 1982. “Maternal Thinking.” In Philosophy, Children, and the Family, edited by Albert C. Cafagna, Richard T. Peterson, and Craig A. Staudenbaur, 101–26. New York: Plenum Press. ——. 1995. Maternal Thinking: Toward a Politics of Peace. Boston, MA: Beacon Press. Sevenhuijsen, Selma. 1997. “Feminist Ethics and Public Health Care Policies: A Case Study on the Netherlands.” In Feminist Ethics and Social Policy, edited by Patrice DiQuinzio and Iris Marion Young, 49–76. Bloomington, IN: Indiana University Press. ——. 2003. Citizenship and the Ethics of Care: Feminist Considerations on Justice, Morality and Politics. New York: Routledge. Shildrick, Margrit. 2005. “Beyond the Body of Bioethics: Challenging the Conventions.” In Ethics of the Body: Postconventional Challenges, edited by Margrit Shildrick and Roxanne Mykitiuk, 1–26. Cambridge, MA: MIT Press. Stevens, M.L.T. 2014. “The History of Bioethics: Its Rise and Significance.” In Reference Module in Biomedical Sciences (3rd ed.). Elsevier. Accessed August 20, 2015. doi:10.1016/B978–0-12–801238–3.00175–6. Tong, Rosemarie. 1993. Feminine and Feminist Ethics. Belmont, CA: Wadsworth Publishing. Tronto, Joan C. 1987. “Beyond Gender Difference to a Theory of Care.” Signs 12(4): 644–63. ——. 1993. Moral Boundaries: A Political Argument for an Ethic of Care. New York: Routledge. ——. 2001. “Who Cares? Public and Private Caring and the Rethinking of Citizenship.” In Women and Welfare, edited by Nancy J. Hirschmann and Ulrike Liebert, 65–83. New Brunswick, NJ: Rutgers University Press. ——. 2013. Caring Democracy: Markets, Equality, and Justice. New York: New York University Press. World Health Organization. 2014. “Mental Health: A State of Well-being.” (2014). Accessed August 20, 2015. www.who.int/features/factfiles/mental_health/en/

Index

abortion 33, 55 About Schmidt 142 A.C. v. Manitoba (Director of Child and Family Services) 106–7 Aboriginal see First Nations agency: and aging 136; and informed consent 14–15, 28; in a liberal democratic state 74–6; and neoliberalism 97, 119–21, 127, 230; of the patient 37, 81–3, 155–6, 162–5, 167; and rationalization and individualization 63, 67 aging: as economic problem 211, 214–16; and modern life 141–2; and mortality 141–2; and obsolescence 140–1; and physical deterioration 135–7, 143–4; and senility 137–8; as social problem 211 Althusser, Louis 235 American Medical Association 37 Antigone 6–7, 14 Arendt, Hannah 1, 69–71, 81, 83–4, 86, 214, 216, 222 Aristotle 231–2 Baby E.J.G. 43–5, 47, 49, 79 Balzac, Honoré de 6 Basaglia, Franco 180 Bataille, Georges 8, 221–2 Bell, Daniel 65 Benjamin, Walter 138–9, 144–6 Bible 43 Binswanger, Ludwig 11–12, 181–2, 184–9 bioethics 230 biomedicine 21, 91–2, 98–9, 101–4, 105–6 biopolitics 97–101, 102, 104, 231 biotechnology 98–9, 102, 229–30

Bleurer, Eugen 183–4 Blum, Alan 79, 215 body: and biotechnology 228–30; and colonization of 100, 102, 104, 106; and deterioration of 143–4; docile 234; individual sovereignty over 11, 28, 30, 92, 96–7, 230, 237–8; and human dignity 49, 53–4, 76–7, 79; as machine 140; as metonym for irrationality of the city 22; see also cancer (and the body); Cartesian mind–body dualism Bonhoeffer, Karl 183 BRCA mutation 150–1, 168, 169 breast cancer 150–4, 168, 169, 171 BUPA 155 Butler, Judith 6, 9, 153, 162, 225, 226, 237 Callahan, Daniel 58 Canadian Cancer Society 93 Canadian Medical Association 37, 76–7 cancer: and the body 100, 105, 149–50, 165–7; and chemotherapy 100; elegiac politics of 102–3; imaginary 152–3, 155–6; and neoliberal biomedicine 92, 97–8; phenomenological approach to 141 cancer advertising: as medico-commercial discourse 154–6, 164; and preferred middle-class demographic 155–6, 161–2, 164–5; and tropes 158–62 cancer patient: as fighter 157, 165, 168; as neoliberal subject 167–8, 170; as survivor 156, 162, 168; and will to live 163 Cancer Research UK 154–5, 168; see also Tesco Canguilhem, Georges 188–9 Canoe Building Project 113–16

244

Index

Capital 126–7 capitalism 11, 17, 19–20, 22, 126–7, 144, 233 care: burden of 218–20; bureaucracy of 6, 14–15; as discourse of justice 4–5; duty of 4–5, 18, 211–14, 225–7; economics of 9, 15, 103, 113, 127, 129, 153, 163, 211, 214–16, 232–3, 235; as ethical problem 209–10; feminist conception of 214–15, 227–8; elder 210–11, 213; gift of 9–10, 17, 225; and human rights 119–21, 124, 127; infractions of 5–6; privatization of 64, 66; regime of 13–14, 20, 135; resistance to 11; selftranscendence of 12–13; symbolic order of 215–17, 220–1, 227 caregiver: ambivalence and intimacy of the 217–21; and conflict between family and physician 13–14, 51–4, 80–2; in immigrant families 218; and notion of care 5, 22; as private vs. social responsibility 213; and subjectivity of 221–3, 236–8; socio-institutional emplacement of the 228–30, 238; see also substitute decision maker Cartesian mind–body dualism 136, 199, 215, 221–2, 229 children’s health see Baby E.J.G; mental health; Sault, Makayla Chomsky, Noam 125, 131 Churchill, Ward 130 Cioran, Emil 8, 13 citizenship: and rights of citizens 80–1, 85; and rights of patients 84–6; Aboriginal 95, 106; neoliberal 233 Cleland, Heather 100 clinical practice 33–4, 38, 52, 55, 57–8, 68, 153, 158, 165–6; see also hospital; psychiatry Coetzee, J.M. 11 Cohen, Lawrence 137–8, 143–4 colonialism see democracy; First Nations communicative action 64–5, 68, 226 community: and intersubjectivity 73–4, 80–1, 83, 85–6; and family support 212; and individualization 233–4; and medico-legal establishment 95; and mourning 102; see also universitycommunity collaboration conduct, Foucauldian 231–2, 234, 237 Confucius 209, 222–3 Consent and Capacity Board 41–6, 46–51, 78–9, 80–2, 84–5 consumer choice 155, 162–3

Cooper, David see Laing, Roland Criminal Code of Canada 35, 56 Cruzan by Cruzan v. Missouri Department of Health 35–6, 51 Cruzan, Nancy see Cruzan by Cruzan v. Missouri Department of Health cultural capital 149–51, 155, 157, 163, 164–5, 167–8, 170 cultural differences see transnationalism Dana-Farber/Brigham and Women’s Cancer Centre 154–5 Dasein 2, 179, 180–81, 186, 188–9, 219 Daston, Lorraine 190 death: and aging 142–3; and avoidance of 145; preventable 105–6; and right to die 35–8; see also time death penalty 9–10 dementia 37, 46, 68, 217, 226 democracy: and colonial heritage 127, 129–30; and minority rights 121–3, 125 De Montaigne, Michel 11, 16, 195 depression 27, 146, 187, 200–1 Derrida, Jacques 8, 9 Descartes, René 229; see also Cartesian mind–body dualism De Shazer, Steve 197 dialogue: between doctor and patient 32; with First Nations 116, 128; with self 222; see also psychiatry disability rights 55 disaster capitalism 233 discourse see language discrimination 95, 162 doctor–patient relationship 6, 27, 32, 68–9; see also caregiver; power; psychotherapy; solution-focused brief therapy Dumm, Thomas 2, 18 Dunn, John 129 Durkheim, Emile 9, 19, 65, 136, 143 Dworkin, Ronald 121–2 education: and changing health habits 6; and call to care 226, 229, 232; commodification of 233; crisis in 71; education-free 15, 21; medical 50; and medical and pharmaceutical advertising 155; and neoliberalism 235; opportunities for 113; and parental responsibility 218, 220; and pedagogy of the oppressed 123, 127 Edward, Justice Gethin 105 Ehrenreich, Barbara 153

Index 245 Elias, Norbert 65–6 Elle 154 empowerment see patient (autonomy); power end-of-life 144–7; see also aging; informed consent Enlightenment 54, 94, 136, 139 epimeleia 238–9 epistemology 181–2 ethical collision 4, 79, 210 ethics: and capacity for consent 92–6; of care 100, 205, 210, 230, 239; and epistemology 188–9; and scarcity of resources 196, 206 evidence-based medicine 101, 153, 236 existentialism see psychiatry Facebook 152 family 212–13; see also caregiver feminism see care (feminist conception of) Festinger, Leon 19 Fink, Bruce 201 First Nations: colonial legacy in Canada 92, 95, 102, 104, 106, 121–3, 125; and Healing of the Seven Generations 109–10, 113–14; and indigenous rights 93–5, 105–06, 128–9; and justice 120, 122–3, 126–7; and Oka Crisis 131; and residential schools 100, 109–10; and traditional medicine 95–6; and treatymaking process 123; and urban migration 112–13 Foucault, Michel 97–8, 125, 138–40, 180, 190, 227, 229–33, 237–40 Fleming v. Reid 38 Freire, Paulo 123 French Revolution 139–40 Freud, Sigmund 17, 22, 102, 146, 171, 184–6, 199, 202, 236 Gadamer, Hans-Georg 74, 76, 77, 78, 80, 86 Galison, Peter see Daston, Lorraine Gardasil 155 Garfinkel, Harold 9 Gawande, Atul 34 gender 150–51, 161–62, 165 genetic risk 150, 167, 168, 169 geriatric see care (elder) ghost in the machine 229 Gilligan, Carol 227–8 Gilman, Sander 153 Girard, René 10, 21 Giroux, Henry A. 13, 233

Globchuck, Samuel 50 Goffman, Erving 5 Goldberger, J. 33, 55, 81 Goldstein, Kurt 188 Grey Zone 5, 83 grief see mourning Grosz, Steven 205 Guichon, Juliet 95, 106 Habermas, Jürgen 64–5, 75 Hacking, Ian 225, 229 Health Canada 234 healthcare: and Chinese welfare system 211; inequities in 151, 161, 164; institutionalization of 74–5; as managed care 196; professionalization of 66; as self-management 7, 234; service model of 227; serving model of 205 Health Care Consent Act 27, 38–40, 55, 56, 93 Hegel, G.W.F. 8, 14, 22, 124, 131, 135, 146 hegemony 91, 97, 102, 103, 157, 230, 233, 237 Heidegger, Martin 2, 8, 21, 186–7, 195, 198–9, 219, 223 hermeneutics 73–4 History of Madness 180 Hobbes, Thomas 7, 82 Hoche, Alfred 182–3 Hollis, James 197 hospital 35–6, 38, 47–8, 50, 57, 66, 91, 101, 210–12, 228; see also Memorial Sloan-Kettering Hurricane Katrina 233 Husserl, Edmund 186–7 Hyde, Lewis 8 hysteria 184 identity 214, 217, 221–20, 236 Ignatieff, Michael 119, 123–6 illness 1, 36, 40, 44, 50, 67, 74–5, 78, 99–100, 104, 106, 136, 171, 180, 186 Illness as Metaphor see Sontag, Susan Impasse Analysis 3–4, 13 individualization see community; patient informed consent: and end-of-life care 51–54, 66–9, 75–6; and illness 75; and law 16, 27–32, 35–41, 67, 75, 83; and patient-centred care 31–5; and patient competence 76–82, 227; and reflective judgment 71 In re: Quinlan 56 InStyle 154

246

Index

intercultural see transnational intersubjectivity see community intimate order 145–6 Jain, S. Lochlann 92, 101–4, 166 Jaspers, Karl 185–6 Jesus 16, 86, 91, 92, 96 Jezebel.com 150 Jolie, Angelina 149–51, 166–7 jouissance 7, 9, 14–15, 22, 220 judgment, determinative and reflective 69–71, 83–4 Jung, Carl Gustav 181 justice: as discourse of care 4–5; and First Nations 120, 122–3, 126–7; restorative 110, 165; social 111, 115, 156, 213, 227 Katz, Jay 28, 32, 67 khrēsis 238 King Lear 144, 146 King, Samantha 153, 169 Klein, Naomi 233 knowledge transfer 1, 111 Kohut, Heinz 202 Kraepelin, Emil 179–80 Kuhn, Roland 189, 190 labor 31, 71, 102, 126–7, 136, 210, 214–16, 218, 233, 235 Lacan, Jacques 8, 16, 198, 200, 220 Laing, Roland 180, 190 language: of cancer 103, 150, 155–6, 170; of care 209, 225, 235, 237, 239; and cultural differences 209, 221; and intersubjective meaning 73; of the law re: indigenous medicine 93–4; and mental health 234; of psychiatry 179, 200–4; and senility 144; and the subject 220; and triggers 18, 20 law: and biomedicine 97, 100; and caregiving 225, 227, 228, 229, 238; and citizens’ rights 80, 121–2; efficacy of science and the 171; and ethical regulations 7; and informed consent 16, 28, 32, 35–41, 67, 75; and lawabiding subject 14; and the medical profession 27, 33, 49–51, 53, 57, 74–5, 77–83, 86; as metonym for irrationality of the city 22; and neocolonialism 92, 94–7, 99, 102; and patient autonomy 41, 78–83; and rationalization 64; and substitute decision makers 45, 77–83, 86;

tension between person and the 14, 16; and violence 10 Law of the People’s Republic of China on Protection of the Rights and Interests of the Elderly 212–13 leukemia 91, 104 Lévinas, Emmanuel 2, 8, 162, 166 life coaching 235 life support 38, 56 loneliness 2, 5, 19, 65–6, 69, 218–19, 239 Lyotard, Jean-François 236 McHugh, Peter 2, 4, 8, 9, 11, 87 McMaster Children’s Hospital 91, 93, 104–5 managed care see healthcare Mandell, Nancy 217, 218, 221 martyrdom 5, 11, 96 Marx, Karl 126 mastectomy 149–51, 168 media 91, 92–3, 99–100, 105, 149–53, 170; see also cancer advertising medical science 46, 49, 53, 83, 106, 143, 163, 179, 188, 229 medico-morality 153, 155–6 melancholia 138, 164 Memorial Sloan-Kettering 153, 156–8 mental health: and categorizations of mental illness 179–80, 186; of children 195–6, 204; and neoliberal definition of 234; servicing 203–5; system in crisis 195–6 Merton, Robert 67 Minkowski, Eugène 180, 188, 190 moral capital see cultural capital morality 162–3, 228, 230, 238; see also medico-morality Mort, Frank 153, 155 Mount Sinai Hospital 154–5 mourning 54, 82, 102–3, 146, 165 “My Medical Choice” 150–1, 167 National Health Service 170 National Post 106 neoliberalism: and biomedicine 91–2, 98, 101–04, 105–06; and care as loan and indebtedness 14, 17–18; and community rights 94–6; and individual rights 81–82; and the neoliberal subject 166–7; and social and institutional forms of 232–7 Nietzsche, Friedrich 19 Novartis 154

Index 247 Oedipus 6–7 oikonomia 231–2 Ontario Court of Appeal 38 Ontario Medical Association 31–2 oophorectomy 151 pain see suffering Paris is Burning 20 Parsons, Talcott 11, 53, 74, 136, 138 patient: autonomy 31–46, 51–4, 57, 76–83, 237; dignity 48–51, 75–6, 79; empowerment 1, 14, 31, 33, 65, 75, 151, 161, 162, 169, 198, 201–2, 234; the exemplary 165–8; individualization of the 64–9; quality of life for the 49–51, 85–7, 211; right to die 35–8, 53; see also cancer patient; informed consent Patient Self-Determination Act 38 pedagogy 71, 86, 123 Phaedo 77, 86 phantasmatics 164–5 pharmaceuticals 98, 155–6, 170 pink ribbon 153, 169 Plato 1, 238 popular culture see cancer advertising postcolonialism see colonialism power: differential between caregiver and patient 68, 82, 226–7; differential between healthy and sick 64–6; and knowledge 1, 226, 230; of the medical establishment 51, 230–2, 237–8; of the state 94, 96–8, 102, 121–2, 124–8, 230–2, 237–8; see also patient (empowerment) power of attorney 38, 40, 42; see also substitute decision maker Powis, Kate 146 Pratt v. Davis 28 prenatal screening 32, 55 Princess Margaret Hospital 155, 169 progress 16, 20, 53–4, 91, 98–101, 105–06, 199 psychiatry: clinical 179–83, 186–7; and doctor-patient communication 144, 200, 205; existential vs. medical 179–81; and individual subjectivity 181; and phenomenology 184–9; and psychoanalysis 187; scientific context of 181–4 psychoanalysis see psychiatry psychotherapy 197, 205 public intellectual 110, 115 Quinlan, Karen 37, 56

race 98, 161–2 Race for Life see Cancer Research UK Rancière, Jacques 2 rationalization 63–5, 75 Reason.com 150 regime 14, 20, 101–3, 120–1, 135, 169, 171, 234 Reibl v. Hughes 29–30 religion 20, 50, 91–3, 100, 102, 129, 171 responsible subject 156, 163, 213–14, 220, 226, 234 rights see care; citizenship; democracy Rilke, Rainer Maria 5, 91, 97 Rodriguez v. British Columbia 37 Ruddick, Sara 227 Run for the Cure see Princess Margaret Hospital St. Louis Dispatch 36 Salgo v. Lelan Stanford Jr. University Board of Trustees 29 Sault, Makayla 92–6, 100, 102, 105–6 Scheler, Max 19 Schloendorff v. The Society of New York Hospital 28 schizophrenia 180, 183–5, 186 Seale, Clive 146 self-care see self-management self-knowledge 2, 8, 31, 222 self-management 7, 67, 91, 95, 98, 167, 222, 234–5, 238–9 sexual abuse 18–19 Shildrick, Margrit 230 sick role 11, 53, 136; see also Parsons, Talcott Simmel, Georg 5, 8, 9, 10, 12, 14, 18, 54, 143, 216, 223 Singer, Peter 50 Smith, George 50 social media 152, 239 social order 142 social science 27, 73–4 social semiotics 152 social work 110, 111, 115, 116 socioeconomic status 113, 126–7, 155–6, 161–2, 164–5, 213, 221 Socrates 77, 86, 238 solution-focused brief therapy: evidence base for 197; origins of 197–8; and transference/counter-transference 198–200, 202–3, 206; and use of language of 200–3 Sontag, Susan 149, 153, 165 sovereignty 96–7, 103, 124–5

248

Index

substitute decision maker 38–41, 41–6, 46–51, 78–9, 80–2, 84–7 suffering 2, 20, 35, 48–9, 53, 67, 75, 79, 179, 204–5 suicide 17, 18, 19, 35, 56 Supreme Court of Canada 29–30, 36–7, 76, 95, 106 Supreme Court of Missouri 35–6, 51 Supreme Court of New Jersey 56 Supreme Court of the United States 36, 51, 169 surgery 29–31, 48, 66, 150–1, 234 Taylor, Charles 73–4 Tesco 169; see also Cancer Research UK Thatcher, Margaret 232 The Atlantic 154 The Globe and Mail 100, 150 The Guardian 57, 149 The New Republic 154 The New Yorker 34, 154 The New York Times 150, 155, 170 The New York Times Magazine 154, 157 Thomas, Carol 214–15 time: biomedical and colonial 102; elegiac time of life 101–4; untimeliness of death 99–104, 105–6; Toronto Star 77

transnationalism 209, 217–18, 221–22 transvaluation 153, 157, 165 trauma 18–20 trigger warning 18–20 Turner, Dale 127–30 Tuskegee Syphilis Experiment 55 United Nations Declaration on the Rights of Indigenous Peoples 94–5 university-community collaboration 110–12, 114–15, 116 University of British Columbia 235 University of Michigan Health System 154 USA Today 150 vegetative state 35, 43, 45, 56, 68, 76, 79 violence 14, 15, 16, 94, 96, 100 Virilio, Paul 22 vulnerability 1–2, 136–7 Washington Post 150 Weber, Max 2, 21, 34–5, 63–4, 75 Weiming, Tu 209, 222 World Health Organization 234 wrongful birth 33 Wu, Kuang-Ming 221