The Politics of Intimacy: Rethinking the End-of-Life Controversy

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Abbreviations ADMD Association pour le Droit de Mourir dans la DignitГ© (Association for the Right to Die with Dignity) APDV Alliance pour les Droits de la Vie (Alliance for the Rights of Life) EDS Euthanasia–Good Death (EutanГЎzie–DobrГЎ Smrt), website started by Milan HamerskГЅ in the Czech Republic that developed into a nonprofit advocacy group EX L’Express, French weekly magazine FI Le Figaro, French daily newspaper GE GГ©nГ©thique, information server of the bioethical press in France HN HospodГЎЕ™skГ© Noviny, Czech daily newspaper INED Institut National d’Études DГ©mographiques JIP Intensive-care unit in Czech hospitals (Jednotka intenzivnГ- pГ©ДЌe). Generally, for patients recovering from an operation. In cases of oncologic patients, for example, these units present a form of transition in care. LI Liberation, French daily newspaper LDN Long-term care unit (LГ©ДЌebna dlouhodobД› nemocnГЅch). The “undesired” option for terminal care in the Czech Republic LN LidovГ© Noviny, Czech daily newspaper MF MladГЎ Fronta Dnes, popular Czech newspaper MO Le Monde, the French daily newspaper NO Nouvel Observateur, French weekly magazine NVVE Nederlandse Vereniging voor Vrijwillige Euthanasie, Dutch Voluntary Euthanasia Society. The main actor in the Dutch debate on legalization of euthanasia.Page x → ODS Citizen Democratic Party. The right-conservative party in the Czech Republic. The former leader and founder of the party was President VГЎclav Klaus. Klaus left the party in November 2008 after the unsuccessful reforms of the government between 2006 and 2008. PA PrГЎvo, Czech newspaper. Historically, RudГ© PrГЎvo was the official newspaper of the Czech socialist state. Therefore, although there has been a major restructuration and change in the editorship, the newspaper that began publication after 1989—PrГЎvo—is still commonly considered to be “the old communist newspaper” or the “left newspaper.”

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Foreword Anna Durnová’s book pushes critical social science into a domain where it does not usually go: the deeply personal issues surrounding death and dying, not en masse on a battlefield or in an attack or a disaster, but individually, in hospitals and hospices, grappling with terminal diseases and conditions. Although the existentialist philosophers sometimes claimed that one’s own death was that ultimate personal experience, Durnová’s book dramatically illustrates that ways of dying are through and through social events and processes. There is thus a “politics of intimacy,” a politics that is revealed by engaged, involved, interpretive, and qualitative social science of the sort that DurnovГЎ excels at. Here we have a series of exemplary moments, comprehensively portrayed, tacking between levels of aggregation and trespassing across state borders as required to tell the stories of how the end of life is regulated and made meaningful in different contexts. The end result is to surface and disclose a politics that might otherwise remain hidden. Treating intimacy—in this instance, the intimacy of death and dying—as a site for politics does not mean developing a comprehensive theoretical account of “intimacy politics” or a set of general propositions about the character of such politics. Instead, treating the intimate connections between people as a site for politics means making clear the dilemmas and tensions that people confronting the end of life have to navigate, and showing how those dilemmas and tensions are connected to broader societal patterns. What DurnovГЎ thus presents is what we might call an inventory of the cultural resources available to people involved in discussions about, and deployed in debates about, how life should end. Situated individual actors make the kind of sense they can out of emotionally trying and turbulent experiences; the kind of sense they can make is structured by the broader context in ways that may not be apparent to the actors themselves, but is revealedPage xii → through careful scholarly analysis. In this way, Durnová’s most obvious substantive contribution is in helping us better understand the thicket that has to be navigated when talking about these intimate moments, and in making decisions within them. Durnová’s book also expands the social science lexicon further in the realm of the emotional. We have a well-established social-scientific language for talking about power and interest, but not as many conceptual resources for talking about emotions. In the text, DurnovГЎ weaves together a variety of work on political emotions, demonstrating the power of that work for making sense of actions undertaken during these fraught moments. She also brings a sophisticated understanding of fieldwork and the character of the evidence that it produces, making the book a demonstration of the unique insights to be gained from working in a more experience-near way than is usual in Anglophone political science. And she also connects her analysis to enduring debates in international political theory about the nature of recognition. This is truly a text that pushes the boundaries of social science in trenchant ways! Durnová’s book nicely exemplifies what the Configurations series is all about. Not only does the book continue the series’ overall mandate of presenting ways of translating contemporary social theory into empirical social science, and not only does it fulfill the series’ goal of showing that politics broadly understood takes place in locations and in ways that fall far outside of the traditional corridors of state power and authority, but it does so by developing an explanation that does not seek to subsume specific instances under general laws—and accordingly contributes to the series’ methodological aim. Mapping contemporary controversies, showing how they are embedded in broader societal transformations and trends, revealing the political and indeed the international aspects of intimate decisions about living and dying: this is configurational social science through and through. Patrick Thaddeus Jackson Series Editor, Configurations

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Preface My own emotional experience with the end of life came toward the end of my fieldwork, when my great-aunt was dying after suffering for six weeks from pancreatitis. Having for some years investigated anxieties related to dying as well as the problems and shortages in the system of care in the Czech Republic, I anticipated that I would be prepared for this personal journey into what until then had been a professional investigation. I knew exactly where to go, whom to ask, how to prepare myself for the eventual grief. As soon as I got off the phone with her doctor, who told me that my aunt had suddenly become worse and would not survive long, I instantly embarked on mad telephoning and texting to other family members to ensure that she would not be alone in the final weeks of her life. The logistics were not easy: I was living four hundred kilometers away from my aunt, my mother (her niece) was on a long-planned journey to a distant country, my sisters were busy with their small children and house renovations, and the doctors would not allow my aunt to be transported to another facility. Knowing there was no hope for recovery, everyone promised to do whatever she could within the confines of her responsibilities to her own families and jobs. Within two hours, we had formulated a plan for care and were poised to implement it. Just as I lay down to rest before starting out again for to the hospital, the physician called again. My aunt had died—much earlier than he would have expected, he said. Our hastily and frantically hatched plan landed in the dustbin, to be replaced by a reflection, similar to reflections I report on in my empirical work. What this event made clear to me is that only in a very limited way can we devise and then follow an instruction on how to handle, in terms of public policy, the end of the lives of our closest dear ones. Much of what happens is unforeseen, sudden, and immediate—terms that policy analysts do not Page xiv →want to hear. This book does not endeavor to propose ways to make dying foreseen and planned, nor is it an instruction manual on how we should—or could—die. Instead, this book reveals how a collective acknowledges the individual emotional experience with the end of life by documenting mourners’ experiences, sometimes chaotic and messy, and revealing how institutional actors respond to and handle these experiences. The various end-of-life practices that are investigated here serve merely as examples of how our emotional experience is negotiated in politics. “Intimacy,” used here as a label for such a negotiation, is a deeply personal knowledge shared with the collective in a specific way. It is through sharing that intimacy offers us its potential for politics, because it privileges some meanings over others and shows us the nature of public power through which politics operates. Focusing on the way meanings are shared represents, at the same time, a certain limit to the analysis. Investigating intimacy related to the end of life implies considering the unique and delicate character this issue has in Western societies. This was reflected in manifold ways by the people I interviewed for this book. Beginning with the investigation of intimacy on the very personal level and extending to the examination of intimacy in the consultation practices of social workers and policymakers in this policy field, the empirical material has helped me construct a diversified terrain for the exploration of intimacy in the end-of-life controversy. Such exploration would be impossible, even inconceivable, without the will and time of persons who shared such intimate experiences with me. Such exploration was also limited to the access to the sphere those persons granted me. I therefore anonymized my respondents to ensure their intimate sphere remains protected, and I combine these experiences with a set of extensive sources available publicly to offer as complex—and complete—a picture as possible. Finally, it would not have been possible to handle this topic with both engagement and reflexivity if I had not been able to deliberate and consult with others. Support from my colleagues has been invaluable for the reflection and for the analysis as it stands. The idea of this book has its roots in my dissertation, and my deep-felt thanks are due to the late Herbert Gottweis, who gave me the courage to carry this topic all the way to this book. I also express particular thanks to Patrick Thaddeus Jackson, not only for bringing a crucial critical voice to this project, but also for supporting me on what has eventually become a longer path than expected, due to the births of both of my children and due to unexpected turns in the political debates I followed in my analysis. Page xv →My deep-felt thanks are also due to other colleagues and friends I could share my thoughts with during

the entire process: Dvora Yanow, Frank Fischer, Philippe Zittoun, Florence Ollivier, Jan Sládek, Dominique Memmi, Ingrid Metzler, Heidrun Åm, Lars T. Larsen, Nick Turnbull, Ursula Naue, Thomas Wenidoppler, Barbara Prainsack, Klaus Høyer, Peter Biegelbauer, Thomas König, Georg Lauß, Katharina Swoboda, Petra Hlaváčková, Jan Daniel, Paul Just, Momchil Hristov, Guillaume Sibertin-Blanc, Rainer Diaz-Bone, Ondřej Slačálek, Julia Mourao-Permoser, Jürgen Portschy, and Helga Pülzl. I also thank Gábor Oláh for inviting me to the “Identities in Conflict—Conflict in Identities” to Brno in 2014, as it offered me a rich stage for discussion and further reflection on the manuscript. I want to thank here the anonymous reviewers of this book. I truly appreciate the time and energy they spent with the manuscript. Further, the Life Science Governance Research Platform of the University of Vienna and the Research Group Technoscience and Societal Transformation at the Institute for Advanced Studies provided substantial institutional and financial support without which this book could not have been completed. It should be noted that this book was aided on its journey by my editor, Deborah Oliver of Ab Initio. Following this project from its very beginning, Deborah encouraged me when I began to lose hope that I could ever finish it, giving me invaluable feedback on language and the way I present my arguments and findings—so important when describing something as delicate as emotions related to death and dying. By and large, it would be unimaginable to investigate this topic without all those who stood very near to me, letting me know their support whenever the issue of the end of life was too heavy for me to carry alone. To thank them is the least I can do.

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Introduction When the controversy over removing the feeding tube of the American Terri Schiavo, who had been in a persistent vegetative state for fifteen years, made international headlines in 2005, it was not just another end-oflife controversy. The case of Terri Schiavo was the first to elevate the previously unquestioned principle of an individual’s rights and freedoms. The emotional intensity of the case, stretched along all actors involved in the debate about whether Terri’s life was a life with dignity, and the heated debates about who should have the authority to decide this all conspired to erode the individual as we knew it. In the Terri Schiavo case, one could not escape the fact that this deeply personal story became a political story starring none other than the US president and the US Supreme Court. One might well ask how these institutions came to make the highly emotional and intimate decision that many families struggle with at the end of life of their next of kin. How did they come to have the authority to make what is, practically speaking, an individualized decision that the medical profession prefers not to regulate in detail and over which medical and legal experts console themselves by saying that they decide on case-by-case basis? The echo of Terri’s story reverberated through every advanced industrial society in the Western world, revealing that we are unable to solve the end-of-life controversy unless we take into consideration the liberal democratic roots of the concept of the individual, namely its autonomy and its dignity. In a quest to solve the endof-life controversy, liberal democratic institutions have come to understand that these two values cannot bring them any further and have entered the subtle and delicate terrain of one’s emotional experience with dying. This book submits this terrain to analysis and suggests that the intimacy of dying is a discursive-cum-political site to be contested, negotiated, or even claimed as universal for every human being by the involvedPage 2 → actors and that it is through this site that intimacy paints the current end-of-life controversies as emblematic for the liberal democratic struggle over autonomy and dignity. The book is therefore neither about normative claims concerning end-of-life choices nor a reflection on which end-of-life choices better suit Western postindustrial societies. It argues that all end-of-life debates—whether policy discussions in support of or against the idea of self-chosen death, or those related to the provision of resources for end-of-life care—expose that autonomy and dignity have not offered a suitable form of mutual engagement between public authorities and civil society. To embed the individual emotional experience with dying into this engagement, and convert it to some kind of policy instrument, is revealed to be repetitive, emotional, and indeed impossible. This dynamic of deadlock is summarized in this book by the “politics of intimacy,” a phrase that requires some explanation. Intimacy is understood, in its historical contingency in the development of end-of-life discourse in Western liberal democracies, as the deeply personal and emotional experience with one’s body and mind that is shared in a way, that is often unspoken or invisible and difficult to articulate but that seeks to be acknowledged as such in a collective. In brief, intimacy is manifested in the end-of-life discourses studied here through the political acknowledgment of emotional experience related to death and dying. The “politics of intimacy,” then, is a way that political institutions enact this acknowledgment by canalizing or depending upon emotions. In this enactment—taking the form of, but not limited to, compassion, empathy, rage, or resilience—intimacy crafts a moral foundation to citizens’ demand that state policies secure their intimate relationships and protect human dignity and autonomy. Not only does this put a different spin on common cultural and ideological debates on end-of-life issues, but it situates intimacy at the liberal democratic intersection of individual rights and collective values. As political and legal values on which the modern individual has been built, “dignity” and “autonomy” have amassed a lot of promise for liberal democratic order. Against that background, on the one hand, right-to-die movements have argued that life for some no longer has the value it once did, so those individuals should have the option of self-chosen death that respects their dignity and autonomy. On the other hand, an increasing number of deaths occur in hospital settings—corresponding to a decreasing number of at-

home deaths—and the number of multigenerational homes Page 3 →that once offered a care network is declining. Together, these technological and demographic changes have anticipated the transformation of the endof-life sector in which autonomy and dignity develop into an opportunity for individuals to shape the novel care settings and to become responsible for the state of their health. When we observe the end-of-life controversy through its global expanse, where there is always another country that has a new story to be inspired by, or another international expert organization that offers an opinion that diverges from national policy procedures, neither autonomy nor dignity has succeeded in overcoming national, cultural, and ideological differences. Although the values of both have been used by supranational expert bodies to support a universally legitimate argumentation about humanity that would guide respective policies on end-of-life choices, all this high-level input has just made the debate far more ambivalent. Focusing on the personal emotional experience with death and dying—the one that won’t track along national boundaries or respect ideological differences—initially seemed to provide some remedy. When events are reported in the media, it appears not to be important whether the patient is Czech, French, American, liberal, or conservative; what matters to those who are reporting about these cases, as well as to those who read them and use them in arguments, is that there is a human being emotionally involved in the fight at the edge between autonomy and dignity, at the margin between death and life. The same goes for speeches accompanying formulation or implementation of policies. Dignity and autonomy are certainly articulated through political negotiations of the social, historical, and cultural conditions of death and dying, but these are increasingly shaped by the emotional experience that becomes the moral ground to support concrete choices and policies. Intimacy is then nourished and established through the focus on the individual in diverse policy argumentations: not only the suffering/dying one, but also the one who decides about care practices for that person in the free, liberal, and democratic world. This emphasis on the individual emotional experience is astonishingly similar across national boundaries and across the diverse solutions being proposed. When advancing legislation on assisted suicide in spring 2014, the Canadian province of Quebec gave its deputies a so-called free vote, which allowed them to vote “with their conscience” even when it conflicted with their party line. Accepted by an 80 percent majority, this vote was characterized as a “careful” one because it was preceded Page 4 →by “serious discussion.” This way of emphasizing the exceptionality of the decision also was seen in spring 2005, when the French Assembly unanimously passed a law quite different from the Quebecois law passed a decade later. The unanimous vote on a law against active euthanasia came despite the political fact that, at that time, the Left and the Right were far from being in harmony on other matters. The unanimous vote was then indeed used as an argument that this decision was made carefully and seriously by each and every parliamentarian. In a similar tone of careful thought, the Grand Duke of Luxembourg decided in 2008 not to sign the law on assisted suicide because doing so would be against his conscience. On that occasion, however, the parliament passed a constitutional amendment so the duke’s approval would no longer be necessary in forthcoming legislative procedures. The end-of-life controversy served here to problematize the individual voice of the duke against parliamentarians’ individual voices. Also, when respective policies are formulated, emphasis on careful thought and the individual is the essential argumentative ground on which to enter the debate. In 2007, when the first attempts to formulate a law on assisted suicide started in the Czech Republic, its proponents insisted upon an “extensive debate,” one intended to last for “at least one year.” The same extensiveness was required also from the other argumentative camp lobbying for a distinct legislation for end-of-life care support, which was understood as a tool against legal attempts concerning assisted suicide. Such a call for extensive debate, and with that for careful thought, has become itself the policy tool to publicly make manifest the appropriate character of end-of-life debate and seek supporters to bring this topic toward legislation. We see the same situation arising in the respective negotiations in Austria, Germany, Italy, and other European countries that have not yet devised a concrete policy, where the call for careful thought and individual consciousness has become a battleground for establishing a collective pattern on end-of-life decisions. Upon closer examination of all these cases, however, political institutions seem to reach a deadlock when trying to

sort through this careful thought and when trying to accommodate the individual requirements and take the emotional experience as the moral ground for their argumentations and decisions. Decisions can easily become irrelevant when the emotional experience is not acknowledged by the institutions. No matter at which stage of the policy process, actors seek to legitimize their position with the help of the emotional experience of a patient or family member, against which stand others with a completely opposite emotional experience. RegardlessPage 5 → of what kind of institutional authority takes charge of the debate (president, parliament, courts, international organizations, nonprofits), the debate is always centered on the same emotional experience that is both necessary and difficult to acknowledge. The evoked cases show that the transnational contours of the end-of-life debate do not diminish the individual but only strengthen the person and equip debaters with novel tools with which to argue for policy solutions. In that way, Quebec’s case was put forward as a pilot case for Canadian legislation and was discussed as such in the 2015 electoral campaign. The French end-of-life debate encountered the transnational dimension by emphasizing that France would have its own way and did not need to follow the lead of Belgium or the Netherlands. Supporters of the French law against euthanasia in 2005 also raised the fact that other countries were inspired by this law—for example, the UK—and argued that France was the example to follow and a good model. The Czech right-to-die movement, represented by the advocacy group Euthanasia–Good Death, has centered its demand for legalizing assisted suicide around the cry that Czechs should have a decent opportunity to end their lives other than that of “going to Switzerland,” where assisted suicide is tolerated. To them, the narrative “go to Switzerland” created a novel space of engagement of political institutions with the individual that goes beyond the border of one tradition, one political system, or one political institution. This book suggests that there is a mutation in public power where intimacy reveals circumstances under which emotional experience is given voice in the policy procedure and when it is understood and accepted as relevant by those in power. That the common rational discourse would like to exclude or ignore emotional aspects of the end of life to make it governable is an inherent part of this mutation. By emphasizing freedom and autonomy, the liberal democratic order offers a number of strategies on the subject of canalizing emotions and cultivating them within collective decision-making procedures. The phrase “politics of intimacy” exposes the procedures through which political institutions enter such dynamics. The politics of intimacy necessitates thinking about emotional relations between the state (embracing the diversity of political institutions acting for the state) and individuals when analyzing policies. This is not to say that the state indeed feels the emotions of its citizen, but it enacts an acknowledgment of citizens’ emotional states to create conditions for organizing death and dying of our loved ones. All these enactments—which are analyzed and representedPage 6 → in this book—are part of an overarching conceptual framework showing how the state negotiates rules to accommodate intimacy, and how, by doing so, the state opens a novel terrain that further problematizes intimacy. The end-of-life controversy then becomes emblematic for the limits of political rationality to offer novel perspective on politics. Focusing on acknowledgment as a tool of power and including emotional experiences as integral components of political rationality, we revise the understanding of policy closure, policy success, and policy failure in the liberal democratic order. The acknowledgment of emotional experience bares the dynamic of deadlock of the individual and the collective, interacting, being in conflict, and governing, and in this way making the end of life controversial. I base my argument on an extensive interpretive analysis of two recent sites of end-of-life controversies in France and in the Czech Republic. In these two distinct sites, state and public authorities articulate both the necessity and the difficulty of finding a suitable response to the end-of-life controversy: the enactment of French legislation against active euthanasia is challenged by the subsequent call for revision by the French public; and the lobbying for end-of-life care legislation by the Czech nonprofit Homecoming is countered by opposing efforts to legalize assisted suicide. In 2005, France adopted a law against active euthanasia as a reaction to a media-fed demand by twenty-two-year-old Vincent Humbert for euthanasia assistance. Neither moral appeals on the misuse of euthanasia, nor a unanimous vote of the law by the French AssemblГ©e Nationale, could reduce either the popularity of euthanasia in public opinion polls or the frequency of public protests, which finally led to a reconsideration of the nation’s end-of-life law in 2012. However, this reconsideration revitalized the deadlock

dynamic of political institutions struggling with how to regulate end-of-life issues in France, which remain unresolved even after the 2016 revision. In the Czech Republic, the nonprofit group Homecoming (Cesta domЕЇ) has lobbied since 2001 for legislation to allow alternative end-of-life care configurations in which terminally ill people could choose to die somewhere other than a hospital. This effort has been guided by the assumption of activists that state regulators are failing to acknowledge the specific needs of the dying, who constitute a distinctive group in the health-care policy arena. The same critique came also from the advocacy group for self-chosen death, Euthanasia–Good Death (EDS), which in 2007 proposed a law on assisted suicide. Both actors have used the same strategy of “implacable institutions” as the galvanizing device to unite activists, experts, and mourners Page 7 →around a patient’s need, but this device became, in the course of events between 2007 and 2016, a recurrent obstacle to a policy solution with and within these institutions. We can trace how, in two divergent courses of events and outcomes, the emotional experience with death and dying is presented by the actors as having something like a universal dimension, with a supranational and supraideological validity. At the same time, we see how, in these two distinct policy settings, the quest for solutions and actions becomes entwined with an emotional tone of discussion, thereby revealing cleavages in the mutual engagement between individuals and political institutions. The present analysis explains these cleavages through the phrase “politics of intimacy,” which initially appears to extend the operation of public power toward the acknowledgment of emotional experience of the individual but brings, through this procedure, that same power into a deadlock dynamic. The analysis therefore deliberately departs from the disorganized and fragmented experiences of mourners to examine the specific discursive practices by which their experiences are handled by the media, hospices, hospitals, advocates of self-chosen death, and state institutions. Such analysis aims at revealing the process by which the political institution acknowledges the individual emotional experience. It uses interviews; debates; speeches; strategy papers of institutions, nonprofits, and advocacy groups; and TV spots and other media coverage—brief discourses—to explain end-of-life policies and resulting controversies as permanent and deadlocked negotiations between the individual and the collective. Individual anxieties, hopes, uncertainties, and wishes communicated toward and with collectives become analytical devices for explaining these negotiations. The politics of intimacy results as an essential constituent of this relationship and is placed at the core of governing processes of Western liberal democracies. This has three implications for the book. First, the book turns to end-of-life discourses and the way that these interact with each other in a governing process of a state. This means that whether the experience is emotional and whether this emotionality can be universal is understood as a part of the discourse that is analyzed. The analysis does not speak to any sort of “evidence” of emotionality, because in the interpretive understanding advanced in this book, there cannot be evidence for something that is so exclusively individual. The core of the present interpretive analysis is the various ways, emotion is claimed and argued for as exclusively individual. It follows that the analysis uses the term “end of life” Page 8 →to encompass political debates and negotiations, both about the regulation of care for the terminally ill and about the legislative status of self-chosen death, because these two phenomena are linked to each other in all current political debates and discussions. They create two interrelated discursive camps that assemble and organize pros and cons. Moreover, to see these two phenomena under one discursive umbrella of “end-of-life controversies” shows how—regardless of the ethical outcome—requirements for acknowledging the emotional experience with dying originate from the same requirements for dignity and autonomy. The analysis makes explicit the political relations in which these requirements are negotiated and shows how the politics of intimacy rearticulates both values, not so much along cultural or ideological lines but along the political boundary between individuals and collectives. Second, interpreting discourses on end of life through intimacy necessarily stretches the notion of politics outside its usual institutional contours. This book loosely adopts the poststructuralist view of politics as a “zone of negotiation” (as defined by, e.g., RanciГЁre 1998, 2001, 2007), in which institutions gain authority through the

deployment of discourses, and sets an analytical path to follow the dynamic of that deployment. In his figure of the “empowerment of the self,” Michel Foucault shows that the public power of institutions is negotiated through practices that the individual adopts, rejects, or revises (Foucault 1984, 2008). Inspired by the rich canon of applying the Foucauldian approach to the analysis of discourses in politics, this book targets emotional experiences as such individual practices and looks at anxieties, hopes, uncertainties, and wishes related to the end of life as these are articulated and performed at the site of end-of-life controversies. The analysis explains how an emotional experience is acknowledged or not, in what particular context this happens, and thereby elucidates the peculiarities of power that political institutions try to install, maintain, or reverse. Third, by targeting the process of acknowledgment of the emotional experience, the politics of intimacy, the analysis touches on the limits of the state’s actions for understanding the nature of governing processes that we are now witnessing on end-of-life issues. The view through the lens of the politics of intimacy necessitates a discussion of the way the state enacts its power along with and against other actors (see, e.g., Brown 1995; Connolly 1996, 2011; and Mouffe 2005) and the way this affects the common notion of political rationality. It also strengthens the placement of the state’s policies in the context of world politics, which has moved the liberal democratic intersectionPage 9 → of individual rights and collective values away from the cultural and sociohistorical battleground (Auchter 2014; Brincat 2016) into a highly emotional discursive arena wherein the universal character of an individual’s dignity (Weinert 2015) and autonomy is debated. The book therefore depicts the state as a dispersed entity, upon which and through which different discursive practices act, and where these can be confronted or consolidated to make a case for a universally valid autonomous and dignified individual. I base my argument on three bodies of literature. First, the notion of “negotiation” follows the move from a narrow understanding of politics as an action of state institutions toward an understanding of politics as a “zone of negotiation” where a diversity of actors—nonprofits, advocacy groups, a group of publics, and international actors—interact.1 I suggest that we regard the state through that optic and that we focus not on the state’s policy but rather on governing processes that expose its policy as a negotiated and often contested discursive arena acting with, through, or against the global order.2 In particular, I build on recent studies on medical practices of the Western discourse on health and dying, in which the move toward politics as a zone of negotiation has been quite influential.3 In the zone of negotiation, second, I target individual emotional experiences through psychosocial theorizing of emotions proposed recently to explain the complex paths of policy processes.4 I argue that how we imagine our own end of life, and what particular meanings we attribute to the end of life of other people, is related to the values and beliefs that are built and rebuilt through the acknowledgment of our emotional experience by the collective, be it the family, the village, the state, or the international community. I use the term “emotional experience” to frame the individual positioning of a person’s end of life. “Emotional experience” refers to the discursive practice stemming from articulations of feelings and emotional states associated with discursive situations (see Czarniawska 2015; Gould 2009; Hochschild 1998; Jupp, Pykett, and Smith 2016; and Zelizer 2005).5 I am interested in the discursive framing of emotional experiences, follow it in actions of political institutions, and call the power dynamic that results from this framing the “politics of intimacy.” The politics of intimacy implies analysis of whether the collective has acknowledged an individual’s emotional experience and, in political terms, whether it articulates power relations among actors. This brings me, third, to consider the politics of intimacy as a zone of negotiation in which meanings are shared and understood in a specific way. While referring to the agenda of Page 10 →interpretive researchers who have shown the heuristic value of discourse in the analysis of politics,6 I offer here a special focus on the acknowledgment of emotions to uncover the ways in which intimate knowledge about one’s own body and mind is shared in a specific time and space. While being highly individual and difficult to grasp, both intimacy and the end of life are sites for collective action, decision-making, and negotiation of the (best) conditions of death and dying for all involved parties. This point of intersection between the individual and the collective makes a case for reflexive understanding of both fieldwork and analysis. Going beyond the particularity of end of life, the analysis makes an argument for an interpretive understanding of “state” and “policy” as results of shared meanings and

for reflexive understanding of political actions. The primary aim of this book is to explicate how the relation between individuals and the political institutions in Western liberal democracies is negotiated with and through intimacy by offering a political lens to read current end-of-life controversies. The existing literature on end-of-life issues discusses primarily the way we die or will die and what we do and ought to do according to our historical, social, and cultural backgrounds. Although it is central, the emotional experience in the end-of-life debates does not replace culture or religion. It might be that religion supports some articulations of emotional experience, just as it is possible that cultural patterns intervene in the representation of emotional experiences to make them acceptable for some and repudiated for others.7 The book argues, however that, unless we move beyond an explanation confined to cultural or ethical/ideological imprints, we fail to explain the current political dynamics of end-of-life controversies. This brings us to the second aim of the book, which is to present the politics of intimacy as a consequence of the post-1968 discourse on liberal democracies centered on the individual rather than on national and cultural collective values. The politics of intimacy lays bare the passage from individual emotional experience to its acknowledgment by a political institution—a passage that occurs through sharing of meanings. While investigated extensively by international political theory, the conflict between individual rights and collective values is analyzed here as a way to think differently about the role of the (historical, sociocultural, national) contexts in which emotional experiences have been shared and acknowledged (or ignored), because it shows that emotional experiences are able to change these contexts. Page 11 →As for the analytical endeavor, the third aim of this book is an elaboration of what I refer to here as “institutionalized practices.” Elaborating on these allows reflection on the manifold discussions in policy theory on discourse, argumentation, and the related process of institutionalization (Colebatch 2009; Fischer 2009; Howarth 2013; and Norval 2012). This endeavor integrates the view on discourse through the perspective of intimacy by focusing on how meanings become consolidated in a practice through actors’ entitlements or through rejections of these entitlements. Who presents which emotional experience and how this gets or does not get acknowledged are part of the institutionalization of the practice. The concept combines interpretive research with French discourse linguistics, which uncovers how meanings come into being through interactions.8 The analysis of the French and Czech cases studies manifold interactions around the policy issue, identifies the time and place they emerged from, and observes if and how individual feelings, wishes, anxieties, and imaginations are acknowledged (or not) in a particular policy setting. In this respect, the book implicitly calls for a subtler and an explicitly reflexive analysis of state-governing processes based on the interaction of different contexts and their eventual transition, initiated or nurtured by the emotional experience (an issue raised also by the debate on doing comparative qualitative studies; see Adcock 2006, Dodge, Ospina, and Foldy 2005; and Yanow 2016). All three concerns of the book coalesce around the main argument illustrated by the end-of-life controversies in France and in the Czech Republic. France presents a unique example of political institutions trying all sorts of established liberal democratic practices—ranging from information missions to citizen conferences—that do not succeed in calming the controversy. The Czech nonprofit Homecoming (see fuller descriptions in chapters 1 and 5) leads us to an innovative way to perform liberal democratic processes by creating a network that governs through sharing intimacy with and of its clients. However, although powerful within the nonprofit, this tool fails to be translated to a policy agenda affecting the actions of state authorities. In both countries, policy suggestions on the end of life have touched citizens’ everyday experiences of anxiety, grief, and their wish to die or to live. In both countries, those emotional experiences make up the core of the conflict and suggest a mutation in the way power operates in politics because, while seeking acknowledgment of the emotional experience, self-governing practices clash with the state. Page 12 →

Book Outline The book is organized into six chapters. Chapter 1 sets the stage for the political investigation of the end of life by

explaining the historical contingency of autonomy and dignity that have been redesigned through technoscientific and demographic changes that have together elevated the emotional experience to its role as a key argumentative device in the particular political debate not only because it guides the actors in their efforts to qualify a way of dying as “good” or “normal,” but especially because the emotional experience echoes and supports the privileged position of the individual in the discourse of Western liberal democracies. Chapter 2 then argues that intimacy—as the acknowledgment of emotional experience—is of central influence for the dynamics of Western liberal democracies and that it offers us a novel way to understand how and why institutions and individuals engage in end-of-life debates. This chapter discusses the threefold influence that intimacy has for the key notions of policy, polity, and politics; it suggests that we need to rethink the notion of the state, and it proposes that we call this dynamic a “politics of intimacy.” Chapter 3 explains the approach we may call “institutionalized practices” that provides an analytic view of this new dynamic by offering ways to investigate what emotional experiences get acknowledged, and by whom, and what stays aside or even gets ignored. This design sets up chapters 4 and 5, in which we follow two recent sites of end-of-life debates—France and the Czech Republic—that illustrate how the politics of intimacy sheds new light on understanding specific end-of-life controversies, regardless of their ideological or cultural shape and concrete policy outcome. Chapter 6 summarizes the findings of both case studies, embedding them in the context of the Western liberal democratic discourse to argue that the “politics of intimacy” exposes the deadlock dynamic of public power not only for the matter of end of life but for the larger context of the intersection between individual rights and collective values addressed by recent state theories and by studies in international political theory. The book makes three contributions. First, it offers a theoretical apparatus of “intimacy” as a boundary of a policy regime that enables us to think of institutions in terms of an “acknowledgment enacting” of the individual emotional experience by a collective. This entails discussions about the changed role of the state as much as it poses a question of the nature of publicPage 13 → power that operates through this acknowledgment. Both case studies illustrate how this policy regime works in practice and how it challenges the very idea of liberal democracy, showing that the end-of-life controversy needn’t be the only example of a politics of intimacy at work. The book’s second contribution is the extensive discussion of case studies that represent two distinct political sites of end-of-life controversies. In both, the politics of intimacy becomes key because it seems to respond, first, to the need to deal with the end of life in a new, and somewhat supranational, way. In a second step, the analysis identifies various concrete articulations of intimacy that consolidate actors into their respective groups and enable us to explain their oppositions and engagements. In that optic, the case studies offer a comparison, given that they show how two specific configurations of historical, social, and ethical contexts of the end-of-life controversy are enacted by the articulation of intimacy. The metaphor “politics of intimacy” then serves as a lens to read the end-of-life controversy as a conflict over liberal democracy. The two sites show, in their own way, that intimacy, while opening an apparently fresh and novel field of engagement between individuals and institutions, has brought them into a deadlock and has raised the question of the resilience of the liberal democratic policy regime. Given its focus on acknowledgment of emotional experience, the book offers, third, a reflection on how to design inquiries of experiences driven and shaped by anxieties, wishes, and hopes. The debate about capturing emotions analytically has been quite broad in the social sciences.9 So was the debate within the interpretive tradition about the necessity to reflexively understand in which way discourses coproduce policies and shape our worldviews. Against the two sites of recent end-of-life controversies, the proposed analytic path explores how meanings are formed and changed through interaction and communication.10 This does not mean reducing emotion solely to verbal interactions, but it emphasizes the role of emotions in these verbal interactions that give rise to policies and expose governing processes. Such analysis necessarily raises a question about the boundary between the “evidence” of the emotional experience and the background, in which that emotional experience is presented and interpreted. Interpretive researchers have abundantly argued that one cannot frame the evidence in a somewhat purified, neutral way.11 It follows that the background is already part of the interpretive analysis because it is related to the development of

the discourse that the analyst looks at and discloses. The same background Page 14 →also frames the position of actors that the analysis identifies. The book suggests means to capture emotional experience in discourses through a rich analysis mediating between evidence and background and making transparent how the background has been identified during the fieldwork. This investigation of the politics of intimacy also provides further methodological guidelines for fieldwork and analysis of emotionally loaded policy issues.

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Chapter 1 The Liberal-Democratic Stage for the End-of-Life Controversy When in 2012 the New York Times organized an opinion debate on end-of-life issues, inviting international experts and activists to make a case for their positions, the debate provided an argumentative summary of the issue in Western liberal democracies: the notion of “dignity” was highlighted as a premise against the slippery slope of euthanasia, and the idea of “deliberative ending of life” was observed—in the context of the unbearable situation of terminally ill people—as an autonomous and dignified choice that ends their suffering. This debate has been one of many media exchanges revealing the tricky spiritual and ethical grounds on which the end-of-life controversies of the Western world seem to stand. Whereas the traditional, religious understanding of death and dying in Western civilization has incorporated irreversibility, spirituality, and moral engagement,1 the focus has turned in recent decades to “dignity.” In its secular version, and in the context of new medical boundaries, dignity is articulated both as allowing death to come in its own time and, conversely, as representing an individual’s choice of when to die (see the works of Dworkin 1994; Kaufman and Sharon 2005; KГјblerRoss 2009). At the same time, autonomy has become a key argument in the current understanding of dignity, both as an argument for enhancing the provision of resources for care for terminally ill people and as part of the debates calling for euthanasia policies or assisted-suicide policies. Through the lenses of autonomy, death ceases to be something that intrudes on us from outside human existence and therefore belonging exclusively to the domain of religion and ethics. The taboo character of death and dying—countered through the Page 16 →medieval figure of memento mori2 (lit., remember that you must die)3—has been replaced by its exceptionality: death and dying are presented as exclusive, unique, and very individual. Through this emphasis on exclusivity, autonomy has then been rearticulated as part of the debate against self-chosen death, advancing the patient’s rights and selfdetermination as argumentative moves against slippery-slope arguments or against societal developments toward the hastening of death. The grounds of dignity and autonomy in the end-of-life debates are inseparable from its historical contingency, as they arise from the recent development of postindustrial societies, whose wealth has made it essential for governments to fight disease and, to a certain extent, to fight death and dying.4 Autonomy and dignity have become the main instruments to guarantee the good character of dying, because they protect citizens in times when commonly known ethical patterns have been rearticulated along increasingly individualized lifestyle choices and when expectations concerning medical achievements are discussed in the context of how to restructure the social environment to accommodate the aging population. End-of-life debates have become part of the general demography that all Western liberal democracies embrace as a crucial political challenge.5 For us to understand the dynamic of the liberal-democratic stage of end-of-life controversies, it is necessary to review the historical sources of the current ambivalence. A good example to start with is the Western premise of medical ethics primum non nocere. The physician “will neither give a deadly drug to anybody who asked for it, nor will [he or she] make a suggestion to this effect” (Edelstein 1943), says the Hippocratic oath, establishing the medical profession as one that cures and never harms. But today, taking the Hippocratic oath word for word is considered an anachronism (as show Smith 1996) or a principle that should be responsive to new medical developments. The Hippocratic oath becomes part of the dynamic of deadlock of the policy debate, because the oath is handled ambivalently in the daily practice of medicine: “assisting someone in dying”—as in assisted suicide—and “accompanying someone in dying”—as in a palliative care setting—can be indistinguishable. As early as 1954, the American theologian and bioethicist Joseph Fletcher predicted in Morals and Medicine a major political controversy over the right to die. The first right-to-die initiative appeared back in 1906 in Ohio.

Similar initiatives have been launched since, including those about euthanasia in 1967 in Florida and in 1969 in Idaho. Although these first initiatives failed, Page 17 →they were the grounds for movements developed later in the United States and especially in Europe, where they were a precedent for the liberal movement toward selfchosen death. These movements connected with the findings of medical experts on “death,” and they invited consideration of the social consequences of the medical developments that have brought human life into a gray zone between the dead and the living. In 1968, a Harvard Medical School study proposed defining death as either brain death or heart-lung death. Today, death is generally defined as the final indisposition of the body, which resides in the organs classified as “vital”: heart, liver, brain, lungs, pancreas, and kidney (as describe Ubel 1993 and Truog and Franklin 2008). The degree of “indisposition” of these organs lies, however, in the concrete form of the medical treatment: several medical treatments render it possible to regulate these organs so that their function can be replaced by medical mechanisms (e.g., kidney, and heart and lungs to some extent). In such a world, where medical progress drew novel boundaries of the margins between life and death, dignity and autonomy became the values that should protect the individual. In the end-of-life discourse, diverse debates within political movements since the 1970s have diversified the term euthanasia to defend its autonomous, free, and, most importantly, “good” character. In this perspective, the term euthanasia6 embraced autonomy because it referred to the free will of the dying one to end his or her life either “actively” (e.g., through lethal injection from medical staff) or “passively” (through refusal of treatment by the patient or by his or her family, depending on the respective legal situation). Further specification came through distinguishing the situation where dying ones actively end their life on their own from that in which they can choose to be helped with the administration of a lethal substance—that is, to commit “assisted suicide.”7 These expert debates were followed and commented on by diverse nonprofit associations around the Western world that have posed autonomy and dignity not only as guarantees of the humanity in the medical innovation but also as logical consequences of the development of values in individualized Western societies. Among many studies, Inglehart’s comprehensive surveys on Western values in 1971 and 20088 supported the appearance of autonomy and dignity as central values of democratic societies, not only in health care but also in working policies and in the general understanding of the importance of human rights in liberal democratic regimes. As a logical consequence of this rise of the individual and the person’s Page 18 →interest in autonomy and dignity, self-chosen death was put on the agenda by nonprofits such as the Dutch Voluntary Euthanasia Society (NVVE) in the Netherlands; Compassion in Dying, founded in Washington State in 1993;9 and Dying with Dignity, which advocated successfully for the Death with Dignity Act in Oregon.10 These are arguably the most important ones to have inspired the development of end-of-life discourse in Europe. These actions were simultaneously shaped by individual cases of people facing the end of life presented by the media or taken up by these advocacy groups and nonprofits. In 1991, Dr. Timothy Quill reported in the New England Journal of Medicine that he had helped his cancer patient die in New York State. Medially prominent all around the Western world were two other U.S. cases—Dr. Jack Kevorkian in Oregon (who between 1990 and 2001 ended the lives of terminally ill patients), and Nancy Cruzan in Missouri (who petitioned with her family for her right to die)—both of which provided a powerful grid of perception for this complex topic through the lens of the patient’s autonomy and have influenced strategies of later right-to-die movements in Europe, making them more centered on the individual and his or her emotional experience.11 In the U.S. context more specifically, the debate on the end of life resulted in legislation in some states regarding “living wills”12 or “advanced health-care directives,” a testament in which signers indicate the terms under which they choose to refuse medical treatment or sustenance. For instance, the 1976 California Natural Death Act gave legal standing to living wills by allowing patients to refuse treatment. This act provided physicians for the first time with the security of not being sued for stopping the treatment of incurable illnesses. In the same year, ten more U.S. states gave legal standing to living wills. Similar legal moves have also been developed in Europe and form nowadays the core of the end-of-life policy in the Western world, quite apart from whether the country has specific euthanasia or assisted-suicide legislation. This background was substantially influential in the

German debate on living wills, as well as many other debates on end-of-life policies in Europe. With these new types of legal documents, consideration of both autonomy and dignity was placed by activists and stakeholders on the other ethical shore of the end-of-life choice, and the two were no longer understood solely as instruments of right-to-die movements fighting for self-chosen death. The European hospice movement, for example, while integrating dignity through its spiritual and religious foundations, has little by little also emphasized the understanding of autonomy as the way to approach the patientPage 19 → individually. Autonomy has become a way to mark a difference from usual hospital settings, which came under criticism for missing this individualized approach. In the European context, the spiritual perspective of hospice movements was linked with codification of the timing of the care in hospices and its coverage by public health services.13 Again, we can see here how the wealth of Western postindustrial democracies, together with individualization, has played an important role in accommodating autonomy and dignity as central ethical values of end-of-life issues, regardless of what particular ethical choice has been negotiated.14 As medical progress has prompted the demand to revise practices that anticipate certain health states at the end of someone’s life, since the 1970s regional “right to die” movements have been popping up all over in Europe. Interesting in this respect, and relevant to all these political debates, is the way these movements have slowly started to work with the individual experience with the end of life and its emotional content as a way to argue for one option or another. Let us mention the Dutch story as one of the most prominent examples. In 1973, the case of Gertruda Postma launched a long-term euthanasia movement in the Netherlands (Kennedy 2002; Leipoldt 2003; Marques 2005; Pedersen 2007; and Vermeersch 2002). For administering a lethal injection to her dying mother, Dr. Postma received a life sentence by the court. In the following years, the NVVE, which supports Postma, expanded its activities by providing information to physicians and patients about how to help someone die. In 1984, a Dutch Supreme Court ruling conceded that euthanasia was tolerable under certain conditions.15 The NVVE contributed to public knowledge about this form of self-chosen death, and when euthanasia became “legally tolerated” in the Netherlands in 2001, the NVVE began to coordinate euthanasia practices and to help patients and their families with the complex administrative procedures in order to obtain permission for euthanasia.16 A similar organ of coordination was founded in Oregon (Oregon Death with Dignity Act Legal Defense and Education Center), which advanced the debate about self-chosen death and in 1994 was instrumental in passage of the Oregon Death with Dignity Act, which enables “terminally-ill Oregonians to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose.”17 Again, the right of individuals and their individual experiences constituted the crucial argument in advancing this legislation. The debates that arose from both the Dutch and the Oregon stories resulted in discussions on a “good death, ” that is, a death that is self-chosen, Page 20 →“painless,” and “under the control”18 of the individual. These aspects became explicit in another Dutch campaign launched by physician Jean Chabot in 1996, who introduced the term versterven into the end-of-life debate (Pool 2004). He claimed that versterven—the refusal of food and drink with the aim of hastening death—could be a bridge between euthanasia advocates and opponents because it represented a compromise on the ambivalent margin between life and death. Nevertheless, the policy debate resulted in the opposite outcome: the Dutch public feared a death made painful by thirst and hunger and the resulting complications, a death that ceased to be viewed within the logics of a Christian ethics of suffering but instead was brought into the context of a painful drama. The Netherlands has become the focal point both for those who are opposed to euthanasia and for European rightto-die movements because it was the first country to introduce legislation sanctioning inappropriate euthanasia. The former group often blames the Dutch society for instituting a principle under which people can be hastened to their death (analyzed in Green-Pedersen 2007). These groups report statistics on presumed illegal euthanasia cases (to which legal conditions do not apply, of course) and claim that bioethicists all over the world watch closely suggested expansions of euthanasia practices, especially concerning dementia patients and newborns. Right-to-die activists, the latter group, do not see in the Dutch story liberalizing efforts of the practice of voluntary and selfchosen death—instead, they perceive it as an organizational effort pointing to “channeling dying practices” by controlling each and every negotiation of health-care wishes and preferences (see the analyses of

the examination proceedings of Dutch euthanasia committees in Kennedy 2002 and Onwuteaka-Philipsen et al. 2012).19 This development of end-of-life discourse shows that autonomy and dignity took a historical role in creating a modern secular narrative of good dying by offering moral constraints that balance the sociopolitical and ethical premises of the postmaterial societies of the Western world with the financial and technical possibilities that rise from such premises.20 However, the increasing highlighting of individual choice, a general consequence of the governing processes performed by liberal democracies, has in fact made them ambivalent and even obsolete. This has prepared the ground for the increasing role of the individual along the lines of the exceptionality of death and dying, evoked in the introduction, which all the exceptional policy tools and procedures that national authorities adopt refer to when defining end-of-life issues as a policy issue, or when setting the institutional agenda. Page 21 →This set of circumstances is how the end-of-life controversy has become a struggle over the role of the individual. As already mentioned in the introduction, in Luxembourg the duke’s veto of the assisted-suicide legislation expresses the increased interest in the individual agency in decision-making related to the end of life, in a way that the enlightened individual is keen to make a morally correct decision. However, there is a clash of the same individual with the collectively framed political institutions that have been developed as a democratic warrant of the liberal democratic regime. When the Duke of Luxembourg announced his intention to veto the law on assisted suicide, this clash became the main negotiation line among political authorities: “I understand the Grand Duke’s problems of conscience,” conceded Jean-Claude Juncker, the prime minister, “but I believe that if the parliament votes in a law, it must be brought into force.” The dispute on assisted suicide became then a dispute over how the public powers handle the individual conflicts of conscience within a collectively framed governing process. For some, the role of the duke was to guarantee that traditional standards would be maintained on important ethical decisions, which was seen as necessary for such existential debates touching on life and death. Others have countered that democratic principles can be guaranteed only through collectively voted institutions such as parliament, where there can be serious discussions where emotions are separated from arguments. The former were given precedence in the course of these events because the Luxembourg parliament overrode the duke’s veto through a constitutional amendment. This amendment in fact stripped the duke of his remaining lawmaking power, reducing his role to a symbolic accessory to the main institution of liberal democracy: the parliament. The situation is analogous in the Quebec case (also mentioned in the introduction) insofar as the Quebec parliament has embedded the individual conscience of each parliamentarian inside its decision-making process and has made this individualization explicit during the debate. Because parliamentarians were given the so-called free vote—so that they are not bound to the vote of their respective parties—the Quebec case shows the limitation of ideological answers to end-of-life issues, represented here through the party line, and illustrates also the demand for exceptional procedures. This demand is strengthened by the larger Canadian context of the end-oflife debate, where ideological and party pressures have been frequently mentioned as hindering finding a solution in this issue. Little by little, the end-of-life controversy has taken a different spin in Page 22 →the twenty-first century. First, national borders—and institutional tools to govern within these borders—have become blurred because end-oflife issues are now debated in a global context by both media and supranational political institutions. This has created a novel space of debate for state authorities as well as for those who want to challenge current legislation or to put something on the political table. Concrete argumentative positions have to depart from the larger context of supranational debates. Second, the consequence of such globally shaped discussion is that rather than articulating the controversy along ethical or national grounds, policy actors find themselves within novel boundaries where debates on “good dying” are increasingly articulated through emotional cases that receive a supranational validation. Liberal democracies have supported this development through the general emphasis on individualized requirements and interpretations, and have changed the end-of-life controversy from a moral and ethical one to a dilemma over how the boundary between individual and political institutions should

henceforth be organized.

Beyond Borders To leave the decision to state authorities in end-of-life issues has long seemed to be the logical secular and modern response, since the state represents the legal authority and political authority of liberal democracies. Focusing on the state’s authority was the response of the European Court of Human Rights in 2002 while judging the quest for an assisted suicide by the British patient Diane Pretty. This response has reverberated in the international debate on the end of life, as it has nurtured legal initiatives in other nations reconsidering the political role of state authority at the turn of the twenty-first century. Diane Pretty was suffering from motor neuron disease and stated on many occasions her wish to end her life. Since her physical condition did not allow her to commit suicide unassisted, she petitioned the British court to let her accomplish her objective with her husband’s assistance. Referencing the British Suicide Act of 1961, the House of Lords on 29 November 2001 refused Pretty’s application to the director of Public Prosecutions to provide assurance that her husband would not be prosecuted if he assisted in her death. When Pretty took her case before the European Court of Human Rights, she became a symbol for advocates of self-chosen death worldwide. She Page 23 →showed the possibility of aspiring to a universal human solution that does not respect state borders or concrete cultural practices of understanding the end of life. Although the ECHR emphasized that decisions concerning the dignity of life and of death remain within the purview of the state,21 the case nevertheless sparked the discussion among international legal experts and triggered international reflection on the quest for a universal, and especially on a “human,” response to the secularly understood end-of-life issues. Many initiatives hailed Pretty’s case as a milestone in terms of educating the public about suffering from incurable diseases and in terms of galvanizing international support networks for self-chosen death that can act within particular states.22 Pretty also showed activists the international avenue they might turn to if they saw state legislation as unsatisfactory and wanted to launch a broader discussion. The World Health Organization (WHO) has entered the end-of-life debate in a similar manner, although it has reacted mainly on the other ethical shore of the debate—the provision of end-of-life care. By regularly publishing material on how to enhance hospice care, it has created a supranational forum for standards of autonomy and dignity. The WHO’s figures are presented and used as “universally valid” in concrete national debates (WHO 2014).23 In chapter 5, which examines the case of the Czech nonprofit Homecoming, we see an example of how these WHO guidelines have affected the agenda-setting in one national end-of-life debate. In other countries, policy actors regularly refer to a variety of WHO statistics to develop their argumentation, be it to support or to deny self-chosen death. The Dignitas controversy in 2005 showed that boundaries between national debates can be blurred by supranational actors, who can open completely novel power boundaries. The Swiss organization Dignitas, which provides physician-assisted suicide services, opened an information office in Hannover, Germany, offering a novel power space in a quite radical way. In Switzerland, legislation on physician-assisted suicide was a result of a legal interpretation of Article 115 of the Swiss Criminal Code in the 1980s. The Swiss code considers assisted suicide to be a crime only if the motive of the person assisting in the suicide act is personal gain. Two associations—Exit and Dignitas—currently provide assisted-suicide services in Switzerland.24 The Dignitas office in Hannover as the legal status of an association and endeavors to inform people about services in Switzerland and to report on the legal situation in Germany, which does not allow assisted suicide or other forms of self-chosen death. The mere presence of Dignitas within Germany’sPage 24 → borders has sent shock waves through the medical and the bioethical communities there.25 The association has been described as “dubious” and accused of “obscure”26 trade practices, and the media have nurtured a negative picture by labeling Dignitas a “factory for dying.” These quotations clearly convey the assumption that “immoral”27 people who perform such services cannot speak about death with dignity.28

But Dignitas is important to mention here primarily because it points to the necessity of responding differently in the context of supranational power boundaries. German sympathizers of the association could not be forbidden to travel to Zurich or prevented from using Dignitas services there (which they often do, according to Dignitas’s own figures).29 German opponents to assisted suicide could not rely in their argumentation solely on national legislation to prevent assisted suicide, because the particular end-of-life practices were “dislocated” from German state policy; that is, they took place in Switzerland rather than in Germany (as discussed in DurnovГЎ and Gottweis 2009). The Swiss example shows us nicely that what happens in one state can become an argumentation tool for setting a policy agenda in another state: both advocates and opponents of self-chosen death argued in terms of emulation or opposition to another country’s policy. After the Dutch administration made active euthanasia legal in 2001, Holland was cited as a pilot case for Belgium, which introduced similar legislation in 2002. When the Belgian senate passed legislation to extend “active euthanasia” (i.e., the life of an individual can be terminated by a medical doctor) to children (Daily News 2014), those who oppose self-chosen death used it as proof of the slippery slope presented by euthanasia legislation. Czech activists advocating for assisted suicide recalled these Netherlandic and Belgian debates in their appeals to Czech political institutions. Dominant in the appeals was the idea that Czech citizens can travel abroad to get what they want. Such travel abroad was nonetheless used to show the threat to dignity: “Czech citizens must keep their dignity and mustn’t travel abroad to get what they want” (Euthanasia–Good Death 2014). The possibility of being judged by an international organization or of being informed about another state, and the simple fact that citizens can travel to another country to achieve what they want, have influenced state authorities.30 The supranational-oriented reorganization of power challenges the institutional boundaries that we commonly experience as drivers of governing processes and invites us to ask how particular social and cultural interdependenciesPage 25 → of end-of-life issues are negotiated and by whom. Through what kind of governing processes are they legitimized in particular countries so that they become—at least for a certain period—settled in form of policies, directives, and legislation? Emotional experience seems to provide the common ground on which to embrace this challenge: end-of-life choice is then considered neither as a moral choice31 nor as a cultural one, but rather as a choice made based on that interdependence.32 This interdependence is driven by the individual. End-of-life cases transmitted in the media rarely appear without specific personifications in which the individual stands with his or her experience against the collective.33 The Spanish case of RamГіn Sampedro, a sailor who became a quadriplegic at the age of twenty-five after being injured in a diving accident, was one such. Sampedro asked for assisted suicide and when refused wrote a book about his suffering, appealed to the Spanish parliament, and initiated a court case, which failed. Another Spanish case was that of Inmaculada EchevarrГ-a, who wanted to end her fifteen-year suffering from progressive muscular dystrophy. Similarly, cases have appeared on the Italian political scene: in 2006, Piergiorgio Weebly, also suffering from muscular dystrophy, claimed his right to die before the president. In the largely Roman Catholic Italy, this raised a huge moral debate on euthanasia. Welby was copresident of Association Luca Coscioni, a nonprofit group engaged in bioethical controversies over life and death in Italy that supports euthanasia as well as embryo research.34 That individualized understanding of end-of-life issues is key for Western discourse can be seen also in the way contemporary dramatic films provide imaginings on what good dying should be through individual compelling stories. These stories, again, depict the individual fight against and with the end of life as incompatible with what the society has to offer. In the Canadian film The Barbarian Invasions (2004),35 a somewhat orchestrated farewell is combined with an open plea for self-chosen death.36 Other films, such as the Oscar winner Amour (2012),37 reveal the emotional state of the dying person and those around him or her, and portray the end of life as a complicated individual emotional experience.38 Another film in that tone, My Life without Me (2003),39 presents the wish for an individualized choreographed death in which a young mother reveals to no one her terminal cancer, instead recording audio messages for her husband and for her daughters’ birthdays in order to explain everything in a mood of calm and serenity.40 All these stories focus on how the individual’s emotional experience Page 26 →with death and dying disturbs

the established social or historical order, thereby putting the issue on the political table. These individual emotional experiences might differ in cultural, ideological, or national contexts, but they are identical in their need to accommodate the individual experience in the collective boundaries of judging and deciding on the end of life. This relationship between the individual and the institution is no longer a moral one but rather a political one. It is supported by the liberal democratic regime taking that individual as a core principle of political actions.

France and the Czech Republic: Embracing the Challenge of the Emotional Experience The ascent of the individual emotional experience, replacing autonomy and dignity, has its roots in sociological thought that has explained the impossibility of developing a language to speak about death (see, e.g., Douglas 1966; Durkheim 1971). This sacred character of death, which scholars have observed in different rituals and practices related to it,41 is often converted into the emotional language of sensation in the media-nourished debate.42 On the policy level, this special situation of death and dying is marked by the exceptional policy tools and procedures that we follow in the two distinct sites we consider here, France and the Czech Republic. The French Debate over the Right Way to Die The first site to observe is the French enactment of a distinctive end-of-life legislation, which began with the case of Vincent Humbert in 2003. Humbert was a fireman, working for his community in the north of France. After a car accident in 2000, he fell into a coma. Nine months later he emerged from the coma but was blind, mute, and quadriplegic. His right thumb became his only means of communication. In his communications with doctors and his mother, Vincent indicated that he no longer wished to live. He did not see his life as having dignity, as he stated in the book I Claim the Right to Die (Humbert 2003), which he dictated with his thumb. On 25 September 2003, the popular newspaper France Soir published a statement by Vincent Humbert: “Mr. Chirac, I claim the right to die.” Vincent had dictated a letter to President Chirac in 2002. The president denied his wish but called for empathy and compassion in Vincent’s situation. The Page 27 →public reacted to this case with a heated discussion about the morality of taking another’s life at the person’s request. Vincent’s mother, Marie Humbert, decided to help her son, injecting him with barbiturates, after which he fell into a coma again. Marie Humbert was arrested and released some days after, and the Vincent Humbert case was debated in the medical collective of the hospital in Berck-sur-Mer, where he had been admitted. The decision was that his treatment should be ended. After the machines keeping Vincent alive were turned off, Dr. FrГ©dГ©ric Chaussoy, the lead physician in Vincent’s case, decided to administer a lethal injection in order to shorten Vincent’s suffering. Marie Humbert and FrГ©dГ©ric Chaussoy were brought to court in 2004 for mercy killing, but their case finally ended in a non-lieu in February 2006, by which the court decides not to judge the matter. Earlier, in autumn 2003, under the coordination of the conservative deputy Jean Leonetti, a parliamentary mission had been established in response to the heated discussion that arose from the France Soir publication of Vincent Humbert’s statement. The mission was to devise a law what would resolve the controversial issue of euthanasia. Medical experts, ecclesiastic authorities, and ethicists then worked to create the Droits de Malades et Г la Fin de Vie (the End-of-Life Law, known as the Leonetti Law), which was unanimously passed by the AssemblГ©e Nationale in April 2005 and which continued to penalize euthanasia. Nevertheless, subsequent to the debates around Vincent Humbert between 2003 and 2005, public opinion polls have shown that around 75 percent of the French population favors legalizing active euthanasia, a figure that held steady until 2007,43 when another highly personalized event reactivated the debate. In spring 2007, the nurse Chantal Chanel and Dr. Laurence Tramois, both employed in the hospital of SaintAstier, injected lethal substances into the veins of Paulette Druais, a patient terminally ill with pancreatic cancer whom they had been treating for about a year. Dr. Tramois ordered administration of a lethal dose of potassium, which was administered by Chanel. Both were brought to court in March 2007, and the so-called Process PГ©rigueux (after the name of the municipality) was followed in the media by both the broader public and the medical community.

During the mediatization of this case, the medical community split into two groups: those supporting self-chosen death and those against it. Although the existence of this division had been contested by public authorities; the Process PГ©rigueux made the debate concrete. The media published a manifesto by two thousand members of medical community, who united Page 28 →publicly in support of the two medical professionals who were being prosecuted. In this statement, two doctors and nurses confessed that they themselves had helped terminally ill patients to die. In the following months, media commentators and opinion pages criticized the Leonetti Law, stating that it would not solve the case of Vincent Humbert and that it would result in other legal cases of suffering patients. Chantal SГ©bire, a fifty-two-year-old woman suffering from a face tumor, was one such. She asked President Nicolas Sarkozy in February 2008 to render it possible for her to take her life with medical assistance. The mother of three children, SГ©bire had been a teacher in PlombiГЁres-lГЁs-Dijon and, like Vincent Humbert, did not feel that her current life would be a life with dignity. In 2000, she had been diagnosed with esthesioneuroblastoma, a rare form of nasal cancer that affects the face. She refused any treatment at the time of her diagnosis, not wishing to assume the risks related to surgery and medications. By 2008, she had been suffering for eight years and, apart from the tumor visible on her face, had also lost some vision and the sense of taste. But she could still communicate. President Sarkozy, as had Jacques Chirac in the case of Vincent Humbert, did not accede to her request. SГ©bire then went to the regional court of Dijon to request medical assistance to end her life. She stated that, if her request were rejected, she would travel to Switzerland, where assisted suicide is legal. After the Regional Court of Dijon rejected her request, she said in an interview for RTL on 17 March 2008, “That is the only solution—I will go there. This was my last battle.”44 Two days later, SГ©bire committed suicide at her home in France. The autopsy revealed that she used a type of barbiturate not available in French pharmacies but common in Switzerland. For many, this made again visible a solution that existed outside of France and reignited the controversy. Through Chantal SГ©bire, the opposition of the public to the political establishment, initiated by the affair of Vincent Humbert, was now given a new face, both symbolically and literally. The disfigured teacher fighting for death with dignity became a symbol for the ongoing controversy unresolved by the 2005 Leonetti Law. The SГ©bire case reopened the debate among experts about the appropriateness of the 2005 law, particularly its suitability to the dilemma in which both patients and medical professionals seemed to be caught when a patient’s end of life was near. A revision of the end-of-life law in France was given a new concrete impulse in July 2012, when the newly elected president of the republic, FranГ§ois Page 29 →Hollande, asked professor and physician Didier Sicard, former president of the National Consultative Committee on Ethics (ComitГ© Consultatif National d’Éthique—CCNE) to evaluate the Leonetti Law, then in force for just seven years. On several occasions during his presidential campaign, Hollande had pledged to reopen the end-of-life debate. Although this factor was not decisive in his winning the election, he felt obliged to make good on his campaign promise. Released on 16 December 2012, the resulting report, known as the Sicard Report (Rapport Sicard 2012), stated that the Leonetti Law was not adequately publicized and therefore was rarely followed. Describing the end-of-life experience outside of France, the report invited a debate on a “French solution” that would offer a compromise and enable patients to be assisted during the dying process. However, the exact form of that assistance remained vague. In its 1 July 2013 press release, the CCNE made recommendations to respect “dignity” at the end of life. Although the committee did not specifically recommend legalization of assisted suicide, it nevertheless stated that the opinion on self-chosen death was divided and that a public debate “should start” (CCNE 2013). More specifically, the committee encouraged debating the question in the form of a citizen forum, which would represent the “diversity of society” (CCNE 2013). This citizen forum was established, counting among its eighteen members policy actors, medical professionals, and activists. The results of the forum’s discussions were published in December 2013. The forum stated that the question of euthanasia could be detached from the debate by coupling the measures of the Leonetti Law (mainly the argument of stopping the “unreasonable obstinacy”) and palliative care settings with the

introduction of a possibility of assisted suicide (Figaro, 16 December 2013).45 The citizen forum further stated that this possibility should be the measure to block legalizing euthanasia, even though exceptional cases permitting euthanasia could be recognized by such a law. The terms used to describe particular end-of-life situations and the sophisticated differentiations between them became the keywords used by the media and the policymakers in early 2014. That same year, the debate was reignited by a new patient. One family, two visions of what life should be: that is how one could summarize the story of Vincent Lambert. Lambert, a thirty-eight-year-old psychiatric nurse in Reims, had become handicapped as a result of a 2008 car accident. He could move his eyes and feel pain, but it was not possible to know if he understood what people said to him. After five years of treatment and speechrelatedPage 30 → therapy, no system of communication could be established with him. In early 2013, the doctors at Reims hospital observed new behavior by the patient, and suspected that this was Vincent’s expression of his will to refuse treatment (e.g., Le Monde, 29 January and 14 February 2014; Nouvel Observateur, 13 February 2014). They discussed this behavior with his wife, who gave her consent to end Vincent’s treatment. The medical team then withdrew his feeding tube and hydration. The family was divided: whereas some of his brothers and nephews supported the wife’s decision, another segment, especially Vincent’s parents, were opposed to it. Both sides were pleading for the dignity of the life at stake—one side in terms of letting Vincent die and the other side in terms of keeping him alive. The case came before the regional court, and on 11 May 2013 the Court of ChГўlons-en-Champagne required the doctors to reestablish Vincent’s feeding and hydration because his parents had not been sufficiently informed at the time of the decision, as required by the Leonetti Law. The medical team continued to argue that Vincent’s situation was—as defined by the same law—irreversible and that continuing treatment fell under both the “unreasonable obstinacy” and “aggressive therapy” clauses that the Leonetti Law framed as a reason to end treatment. The case went finally to the Conseil d’État (French supreme court), which ruled in February 2014 that, indeed, these two elements of the Leonetti Law could be applied to patients such as Vincent Lambert (Europe 1 2014). This was not the end of the matter, though; the court asked three additional medical experts to evaluate Lambert’s state. In June 2014, the court decided that withdrawing the treatment and ending his life in that way was consistent with the intent of the Leonetti Law. However, later the same day, the European Court of Human Rights, responding to a filing by Lambert’s parents, requested that his treatment not be withdrawn until the ECHR could decide on the case. Article 39 of ECHR directives foresees a provisory measure to block a national decision in cases where the decision could lead to “irreversible damages.” In June 2015, ECHR finally reached the same conclusion as the French supreme court. However, the medical collective treating Vincent Lambert decided in July 2015 not to withdraw treatment. The ambiguity of this case was symbolic of the larger context of the French end-of-life debate in that period. The debate led to a revision of the Leonetti Law, the so-called Clayes-Leonetti Law, passed in 2016, which was presented as a compromise, opening the possibility of terminal sedation for patients, that is, sedation that would hasten Page 31 →their death. However, it was received with concern by both sides of the debate and faulted as being ambiguous. We can identify three phases of the conflict that shaped the development of the end-of-life controversy in the course of events between 2003 and 2016. In the first phase, the Vincent Humbert affair revealed a rather traditional conflict in liberal democracies between an “uninformed public,” as it was portrayed, which wants euthanasia because it cannot grasp the complexity of the issue, and the “enlightened institution,” which assumes this complexity in dispensing information and in its laws. The second phase began in 2007, when the Process PГ©rigueux opened the door to requalification of this conflict between collective, accepted “convention” in treating the end of life, and individual “inventions” of nonconforming practices, which are crucially strengthened by experiences in other national contexts. In the third phase, the SГ©bire case repositioned the controversy as a conflict between those desiring an empowered decision based on intimacy, and those who wanted to maintain the status quo for the sake of the same intimacy. The aspect of empowerment became crucial for state actors in 2012 through the Sicard Report and the debate that revolved around it because, unlike the Leonetti parliamentary mission in 2003, the Sicard Report gives a larger place to publics and to their

emotional experience with and at the end of life and opens the debate to consideration of the supranational value of the emotional experience. However, rather than ending the controversy, this move represented its culmination, as also happened with the debate about Vincent Lambert, because the institutional actors reacted with the same arguments that the public had used previously: they felt unheard, excluded, and unacknowledged. This dynamic of deadlock, of two sides stuck in a relationship between the individual and institutions, paves the way toward the regime of governing that I frame as the politics of intimacy. The Czech Debate on the Right Way to Die The other site that we follow, the Czech end-of-life controversy, coalesces around similar conflict lines but grapples with them through different policy instruments. The Czech story began, so to speak, one step behind France, as sections of the populace wanted, first of all, to put the topic of the end of life on the political table as a part of the democratic restructuring after the Page 32 →end of the Communist period in 1989. This effort was mainly led by Cesta domЕЇ, Homecoming, which was founded in 2001 as a secular private nonprofit agency. Homecoming’s agenda was from the outset oriented toward both professionals and patients: it included family members and friends who organized care for the dying and consulted about medical support (information about symptoms, incontinence products, or medications), administrative support (legal provisions and applications for state financial aid), and psychosocial support. Homecoming ensures that hospice services are provided, including information for both lay and medical communities, and lobbies for improved hospice services, mainly through networking within the expert community. Homecoming’s first major initiative was a mobile hospice unit, which began operation on 1 January 2003 and was financed through beneficiary activities as well as international grant programs helping to professionalize the nonprofit’s operation. At this writing, it has about seventy executive members and is supported by both public funds and private donations, among them the leading Czech bank, ДЊeskГЎ SpoЕ™itelna. The absence of a clear legal frame for end-of–life care in the Czech Republic was the trigger for the second major initiative, which began with advisory services online at Umirani.cz (Dying), in 2002: “We want fill the gap of knowledgeВ .В .В . and of sharing experiences,” revealed one of the Homecoming team members (interview CZ 8). This online tool enabled other Czech experts and the lay public beyond Prague to network with regard to their experiences with end-of-life care. Homecoming dominated the end-of-life care policy debate between 2001 and 2016. It pointed to the shortcomings in Czech end-of-life care and shaped the agenda by telling the personal stories of patients and experts. It became the opinion leader in the expert debate. The nonprofit’s efforts were, however, countered by actors who had a different philosophy, as well as by unfortunate experiences with the Czech system of end-of-life care. The most crucial professional institutions in the debate have been units for patients who are long-term ill, the socalled LDN (LГ©ДЌebna pro dlouhodbД› nemocnГ©, or long-term care unit). According to 2015 figures, there are seventy-four units for long-term patients, which account for 6.8 percent of the total number of beds in hospital settings. Only six of the LDN units are run by the state—five by the Ministry of health Care and one by the Ministry of Defense. The rest are run by regional administrations (thirteen), by city administrations (eight), or by other secular or religious organizations (forty-seven).Page 33 → The number of deaths in LDNs—compared to those at home—grew in the 1990s, and the numbers continued to increase at the same rate in the first decade of the twentieth century. Although the main purpose of these units is care for the long-term ill, about 20 percent of patients in LDN units die there (UZIS 2012, 2015), and for such care facilities, a 20 percent death rate would actually be very high (e.g., for hospice, 80 percent of patients die in the facility). These figures are revealing: LDNs hospitalize regularly terminal patients because of a lack of other services that could or would accommodate them. LDN units thus present a crucial instance of the effect of a missing policy formulation regarding end-of-life care, due to “the fact that those people do not belong there, that their quality of living could be totally different” (interview CZ 9). LDNs have become a terrifying example of exactly how an end-of-life care policy should not function (interview CZ 5). Homecoming’s main argument has been that although the total number of hospices is comparable to

that in other European countries,46 the Czech system lacks alternatives47 that respect the dignity of the dying. Complicit in this fact is the generally insufficient public awareness about the services that hospices provide (DoleЕѕalovГЎ 2008; SlГЎma 2001; KubeЕЎovГЎ 2003). Rather than being admitted to hospices, patients are often admitted to LDNs. A crucial moment in Homecoming’s activities dates to 2007, when attorney and policy advisor Milan HamerskГЅ, together with the deputy of the main conservative party (ODS), Boris Е ЕҐastnГЅ, proposed in the Czech senate a law on assisted suicide. Joining forces with political actors from larger parties gave HamerskГЅ the leverage to introduce discussion of assisted suicide into Czech politics (interview CZ 13). The so-called Death with Dignity Law, aimed at legalizing “assisted suicide,” was comparable to legislation in Switzerland and was the first specific end-of-life bill in the Czech Republic. However, the parliament rejected the proposed law in 2008. Despite its rejection, the Death with Dignity Law represented powerful opposition to Homecoming’s activities. Milan HamerskГЅ began a website, Euthanasia–Good Death (EDS, EutanГЎzie-DobrГЎ Smrt), which reported on his initiatives to pass legislation. EDS provided an overview of the media debate around selfchosen death worldwide. Eventually, EDS developed into a volunteer organization that organizes information campaigns for the purpose of developing a legal proposal on assisted suicide in the Czech Republic and otherwise advances the agenda of self-chosen death in Czech media. It is funded entirely by private donors. Page 34 →Homecoming has countered these efforts with regular reports on end-of-life stories that highlight the need for intimacy, with the main arguments being that good dying is possible without self-chosen death and that EDS’s proposition harms human dignity. That the individual emotional experience related to the end of life is not only crucial for good end-of-life care but also can be harmed in the context of current health-care reforms became clear in the larger context of the debate—initially through the law establishing co-pays for doctor visits (known in the Czech Republic as regulation fees) that went into force 1 January 2008. Co-pays have been defended as a means of avoiding “unnecessary visits” to health-care providers. Defenders argue that people—especially the elderly—frequently go to the doctor not because they are ill but because want to chat about their health, and thus “hinder the effectiveness” of the health-care system. Copays inform users that each visit costs something and are, in the eyes of their defenders, a self-regulation tool that encourages consumers to see the doctor only when it is “really” necessary. This became a powerful argument in end-of-life debates because it visualized the autonomous patient, that is, a patient who understands she should not “annoy” the physician during and exam by “wanting to talk” (parliamentary debate on the regulation fee on 12 February 2008). Concerns about the preservation of patients’ autonomy and dignity on the part of those who criticized the law resulted in its coming before the Czech Constitutional Court. On 20 May 2008, the court ruled that regulatory fees were consistent with the constitution of the Czech Republic. However, seven judges published a dissenting opinion. The dissent was powerful enough to result in the ouster of the health-care minister.48 The new minister changed the policy slightly by canceling co-pays for children and the chronically ill. Discussion about the law emphasized the danger of the argument that the elderly hinder the health-care system, which was compared to Homecoming’s notion about end-of-life care—both viewpoints suggested that human dignity was being neglected for the sake of institutional efficiency. The conflict between Euthanasia–Good Death and Homecoming nevertheless continued, and it is noteworthy that both sides have concentrated their arguments on intimacy as it arises in typical experiences with death and dying; both advanced their respective stories as evidence of the “need” for “good dying.” This “need” was always articulated through intimacy and, as such, galvanized experts into opposed groups. Both camps have depicted Page 35 →Czech institutions as implacable because they do not grapple with the issue of dying, instead leaving it to a stressful negotiation among individual citizens who are perpetually at risk of getting lost in the current legislative and discursive amalgam.

In 2014, the opposition between the two opinion camps was rejuvenated by the Czech media reaction to Belgian legislation in 2013 that expanded euthanasia to children. Homecoming felt that this development confirmed the danger of bringing euthanasia to the political table. It launched a campaign the same year under the slogan “We don’t die as we would want to because we don’t talk about it.” The aim was to enhance public awareness of the legal option of a living will, also called an advanced medical directive. The campaign also embraced other activities that expanded public knowledge about good dying, particularly about the emotional needs of patients. This course of events also boosted the activities of EDS, which encouraged a revision of the failed Death with Dignity Law from 2007. The parliamentarian JiЕ™Г- ZlatuЕЎka proposed new legislation in September 2015 and argued—with the support of EDS—toward its vote that however kept to be postponed through 2016. Through the activities of Homecoming and the constellation of related events between 2001 and 2007, we can observe the conflict between political institutions, which are seen as implacable because they are unable to arrive at consensus about a difficult issue, and the civic sphere in satisfying the claimed “need” for good dying through networking, discussing, and informing citizens about their rights and possibilities. Homecoming’s mirroring of the activities of the organization at the other pole of opinion, EDS, from 2007 onward, shows that this conflict is not related to one particular agency or one particular end-of-life choice. As both camps rely on intimacy, the development of the end-of-life controversy between 2007 and 2016 rather demonstrates the common liberal democratic conflict over whose knowledge should prevail in decision-making, yet it reframes this conflict as the one over whose domestication of intimacy should prevail. Such domestication of intimacy is however not related to some kind of sensational tone that both actors used to highlight their advocacy. Rather, it can be found in the private discussions on the end of life. I show this later through an extensive inquiry into mourners during the same period. This triple focus on the need for intimacy—through Homecoming, through the mourners’ experiences, and through the broader context of the Czech debate—discloses the indissoluble boundary of the acknowledgment of the individual’s emotional experience by institutions. Page 36 →

From the Right Way to Die to the Analysis of Intimacy The Czech end-of-life controversy—although it stems from a unique institutional context and revolves around examples of end-of-life issues that differ from the French case—points to an analogous conflict with intimacy. The first similarity is that the Czech debate, rather than relying on arguments about history, traditional values, or cultural references, highlights the emotional experiences of the dying and of those caring for their dying loved ones. Both countries compare this emotional experience with what occurs in other nations, then propose legislation specific to end-of-life matters not because it would suit the particular country’s context but because it would suit the universal Western premise of human dignity and individual autonomy. This bring us to the second similarity between France and the Czech Republic: a back-and-forth dynamic in which actors do not end up with conclusive legislation but instead hesitate, discuss, and negotiate. In the Czech case, we can follow this dynamic through the quest for an acceptable place of death. This desired place can be understood as a specific habitation of intimacy that at the same time exposes how the coexistence of individual autonomy and dignity is ambivalent or even contradictory. The contrast between Homecoming and Euthanasia–Good Death from 2007 onward reveals the difficult relationship between the individual and political institutions. Both the French and Czech cases teach us important lessons about the political role of intimacy. Intimacy is used as an argumentative ground, navigating us through the plurality of experiences offered by the Western context of end-of-life issues. In that context, even a tentative effort to recall national specificity, as sometimes happens in both policy debates, is placed within the supranational arena because it is presented either as a conscious detachment from all other states that have legislation on active euthanasia, or as a conscious adherence to all those that don’t have it. That France should have a “French solution”—as stated on many occasions—is clearly a reaction to this global context of the end of life that would have offered manifold possible solutions. However, the “French solution” remains unachieved because the controversy continues to be challenged by both national and international political institutions. The same international boundary can be seen in the “Czech solution”

argued for by the Czech nonprofit Homecoming, which references initiatives outside of the Czech Republic to persuade Czech policy actors that specific end-of-life care is possible. However, the turn outside the Czech Republic also permits the introduction of discourse on active Page 37 →euthanasia into the Czech debate through Euthanasia–Good Death. That is why, in the course of the debate, Homecoming modified its strategy by domesticating the emotional experience of death and dying and by indicating that a debate on active euthanasia was unacceptable unless there were care services comparable to those in countries that have both proper end-oflife care and legislation on active euthanasia. Beyond elevating intimacy, there is a second—and even more important—political lesson we can draw from the case studies. We observe in both cases that the personal stories of those who go through an emotional experience with dying are essential in helping others understand the notion of “good dying.” Both debates seem to nourish a clash between the collective and the individual dimensions of the end of life. This clash brings us to a closer analysis of the relationship between the individual and political institutions, in particular as a relationship in which the latter deploy power through acknowledgment.

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Chapter 2 Emotions in Policy, Polity, and Politics Intensified focus on emotions is one of the commonplaces liberal democracies experience through media coverage, cultural events, and political campaigns. We more openly expose emotions in public, we talk about emotions as factors of choice making, and we address citizens’ emotions during decision-making, just to name a few recent examples. Emotional experience has developed into a legitimizing posture of institutions regulating end-of-life issues because they have become the ground on which to navigate end-of-life discourses in the global amalgam of history, culture, secular society, and technoscientific progress. To legitimize why they have created, or are endeavoring to create, conditions that allow citizens to die well, institutions bring the emotional experiences of patients, family members, and experts to the end-of-life debates. Emotional experience thereby enters the core of the governing process: how an issue becomes a policy issue and who takes part in the related policymaking process. Investigating emotional experience in politics is far from novel, and a bevy of summaries elucidate that the inclusion of emotions in the study of politics was wedded to a certain paradigmatic framing, making them opposites of rationalized institutional procedures and scientific expertise.1 If emotions have in recent decades gained importance in studies of international relations, social movements,2 and interpretive policy analysis, two important insights stand out from this interest: first, that emotions are both individual and collective occurrences, and, second, that they can be investigated in interactions among actors, that is, in political negotiations. Emotional experience enters our interpretations and our interactions, thereby entering also governing and the dynamic of policy regimes. The present analysis is interested in the nature of this entrance. From this perspective, I target emotions in the relation between state authoritiesPage 40 → and the individual neither as causal factors,3 nor as actor-oriented processes,4 but as “experiences” having a specific relation to meaning.5 Emotions are here concrete discursive forms of externalization of intimacy. For that reason, I prefer to speak of “emotional experience” as a verbalization of what is wished, felt, hoped for, or feared and am interested in the way this verbalization creates arguments: moral supports for advocating end-of-life choices as good, relevant, or legitimate. This focus implies that how a particular community takes charge of end-of-life issues is linked to the negotiation of the verbalizations that are linked to practices and that together coproduce the collective semantic boundary identifying “good dying.” In such a negotiation, “good dying” is a result of some emotional experience being acknowledged while other emotional experience is not. Emotional experience is then the explanatory vector of how practices become, or fail to become, institutionalized in end-of-life debates. Both dignity and autonomy certainly support these negotiations. Dignity becomes materialized in the principle of the state’s foundation that establishes the symbolic margin between dead and alive, and—most importantly—that makes death exclusive in the sense that it is absolute but also intimate. Autonomy is made explicit, for its part, in the way the individual is embedded in the governing process through informed consent practices, participation, and the potential to contest or protest. As with dignity, the role of autonomy is reinforced by the fact that dying is a highly intimate issue. Yet the acknowledgment of emotional experience adds a novel perspective allowing us to see inside the relationship between individual and the institution, which is crucial for liberal democratic policy regimes. In order to investigate intimacy, we must detach end-of-life debates from the dimension of morality politics commonly discussed in the context of end-of-life policies,6 and we instead investigate the power boundaries along which state authorities deploy moral codes and call upon cultural resources to legitimize their propositions and instruments with which they want to achieve them. Although notions such as “compassion” and “empathy” have been amply reflected on as useful concepts to frame this relationship—visualizing collective emotional responses to personal experiences7—the notion of intimacy goes beyond them. First, intimacy touches upon the exclusiveness of one’s emotional experience with death and dying as well as of its

ultimate character. Both these characteristics place the principal focus on the individual’s self-reception and on self-determination in the political landscape, rather than on the collective dynamics the embedding of individual’sPage 41 → choice implies, as do compassion and empathy. Through this focus on the individual, second, almost by definition intimacy makes it difficult to transpose interpersonal relationships, and personal responses to death and dying, to political relationships and political positions. That death and dying are offered up as a spectacle having a larger audience disturbs the established institutional order of postindustrial societies. In a situation where states try different strategies to handle these spectacles, intimacy offers a pathway to understand these problematic rearrangements, enacted by vehicles such as empathy and compassion. As made evident from the outset of this book, the political and the intimate faces of the end of life complement each other, almost implicitly and self-evidently. I make this complementarity more explicit and outline its political dynamics now because it leads us inside the relationship between the individual and the institution. The evoked emotional experience of the dying and the death of others—be these our loved ones or people whose stories we follow through the media—becomes contrasted with sociopolitical regulations that treat death and dying as something where the emotional and rational should be separated or at least acquire clear and distinct contours. Now, there is a tension expressed throughout all the political debates, which represents this crucial boundary between collective and individual dimensions of how we experience the end of life. For us to understand this boundary, we must name it: the intimacy of dying. Intimacy is, in its everyday practice of hospices, hospitals, and other end-of-life care facilities, a negotiation between financial and technical possibilities and the social and emotional involvement of the affected persons. That same tension can be followed in the political debate on endof-life choices and regulations. Covering both the innermost knowledge of a person and the mode of sharing this knowledge, intimacy is able to define these articulations of power. It strikes at the understanding of the nature of the issue being discussed and regulated, thereby affecting the structure in which it is discussed. With both these characteristics, intimacy reconfigures the governing mechanism by making it fuzzy, disordered, and deadlocked. Intimacy—as the acknowledgment of the emotional experience—acts in this way during all three phases of policymaking, that is, policy-polity-politics, and frames particular institutionalized practices of deciding, debating, and protesting. “The politics of intimacy” is therefore examined as a dynamic of public power that lies beneath the reciprocal emotional involvement of individuals engaged in policy interactions, or negotiations around end-of-life issues. Page 42 →It invites us to look more carefully behind these negotiations and to search for reasons why it seems impossible for the choice of the individual to be collectively embedded. Either policy claims deal only with the “rational” side of the issue, thereby appearing as incomplete, or the proposed policy is itself an unacknowledged emotional reaction to the issue, and so is self-deceptive. At the same time, the nature of an appropriate reaction remains ambivalent. The phrase “politics of intimacy” reflects, then, this governing process that tries to accommodate, to acknowledge, the emotional experience with the end of life as a component of “good dying,” but that, by so doing, brings politics back to the conflicting boundary between the individual and the collective. The politics of intimacy, while suggesting a new regime of governing, also suggests a new way of looking at the political institutions and follows three paths. First, intimacy enters the arena of the ambivalence of knowledge around end-of-life issues. Examining how emotional experiences are organized in discourses explains why some discourses on end-of-life issues dominate the policy agenda, whereas others remain marginalized. Second, responsibilities are blurred when end-of-life policies are formulated or implemented, mainly as they problematize who is the expert entitled to speak about the end of life and to govern the policy field. This puts forward “acknowledgment” as a criterion for governing. I argue that self-governing practices gain ground and affect the actions of political institutions. Third, it seems that self-governing practices henceforth reframe the dynamic of policy process. We can conceive politics of intimacy as an emotional midpoint of public power stretched between the individual and the political institution. Not only does this place self-governing practices in an important position, but it suggests that the public power operates through acknowledging techniques rather than through traditional decision procedures.

The present investigation is placed within the poststructuralist notion of politics as a “zone of negotiation” (Braidotti 2006; Connolly 2012; Howarth 2010; Mouffe 2005; and RanciГЁre 1998),8 engaging institutions in deployment of discursive techniques through which they seek to legitimize the rationality of their actions.9 These discursive techniques relate to various social forces that articulate requirements, are oppressed or emancipated by each other, and that negotiate together the transformation of the society. The idea of a zone of negotiation10 emerges already in the way a policy problem is defined as such and how it is framed through the acknowledgment of emotional experience as a relevant issue. Similarly, within policy formulationPage 43 → and implementation, different meanings (values, beliefs, myths, narratives, scientific facts, etc.), are positioned together in a constellation that either legitimizes a particular policy or rejects it. Policy becomes the starting point for the analysis as a set of discourses around which actors, meanings, and structures are gathered. This uncovering of the subtle ways that issues become policy issues has led to the explanation of political agendas not only in terms of state activities but also in terms of civil society actors, contesters, and outsiders of knowledge processes, including their cultural, social, and political backgrounds in the studies of policy analysis that label themselves as “postpositivist,” “interpretive,” “poststructuralist,” or “critical.”11 These streams of policy analysis have focused on how discursive techniques operate within plurality, ambivalence, and a possibility of confrontation and competition of knowledge. Through their lenses, the end-of-life controversy is just another example of such confrontation. I therefore understand here “the political” to be a zone that “matters,” which is why it gives impulses to negotiations. The perspective through politics of intimacy can explain, I argue, why the zone matters, to whom it matters, and how it matters. I aim to uncover the nature of these negotiations that lend meaning to practices and ensure their institutionalization. Any practice is considered to be institutionalized when it is acknowledged by a particular collective, and when it is practiced continually and subsequently viewed as “good” or “normal” or something similar. I see the institutionalization as a zone of negotiation where the old “conventions” enter into competition with “inventions.” And I entrust a considerable role to the politics of intimacy in the way the negotiation is carried out.

Rethinking “Policy”: The End of Life as a Zone of Negotiation of Intimacy Dying happens every day around the world. People die from cancer, hepatitis, or influenza, in hospitals, in the streets, in solitude, and in pain. The examples we discuss here occur in the usual plot of the postindustrial societies that have a certain level of health standards where death and dying disturb the image of wealthy societies. Stories about people at the end of their lives move us because they remind us of our own vulnerability and mortality; they shock us because they appeal to our feelings of compassion, love, and fear, and, most importantly, because they reveal to us their conflictingPage 44 → boundaries. To begin with, the notion of love paradoxically separates families, fostering hate. The notions of dignity and autonomy become problematic as question marks line up on either side of a possible end-of-life decision. Analogies, narratives, and metaphors are the powerful skills that usually enroll such debates. Readers do not personally know those people, but they see how they die. They interpret the character of these people via respective media cover stories: they coproduce their view on death and dying through the acknowledgment of the emotional experience they receive via cover stories, narratives, and photographs, all of which constitute discourses on death and dying. What lends these plots social and political relevancy is that the current end-of-life discourse of the Western world is presented in such a way that no value is absolute and no truth claim is incontestable. In such a posttraditional configuration of modernity, the emotional experience and its acknowledgment receive supranational validity because they build an overarching, and in that sense somewhat ultimate, discursive register of what it means, or should mean, to be a human being: to be a free autonomous individual with dignity. That within the same normative claims (such as the ending of suffering, and the loss of human dignity, and the proscription against killing) the national legislations can arrive at opposed conclusions is not due to historical or cultural explanation but to a specific story of how the emotional experience has been acknowledged, by whom it has been acknowledged, and by whom not. The cultural or historical references do not function as a sole explanation for such controversies; rather they are building blocks of that acknowledgment as they get articulated and performed through it.

There is a reason to highlight intimacy through acknowledgment of the emotional experience. On the one hand, negotiations related to the end of life reveal the same concern about the appropriateness of emotional experience that has been revealed by the research on sexuality and sexual behavior suggesting that subjects are distressed by the gap between what they feel and what they think society tells them they should feel (see analyses in Foucault 1984, 2008; Martin 2001; Nettleton 2000; Roseneil 2010; Roseneil and Budgeon 2004; and Turner 2008). On the other hand, the emphasis on the way that end-of-life issues make it to the political table suggests that intimacy has been elevated to one of the most important concerns because it touches on the emotional sides of dignity and autonomy, making them instruments of intimacy in the end-of-life debate. Page 45 →Intimacy makes concrete the relation of individual emotional experience to its collective representation in the form of discourse. Under that optic, policy turns to a set of discourses that are put into the context of the collective. This set is nurtured and driven by public initiatives, the media, and personalized stories that become the object of public opinion and the triggers for political action. As a sort of general reaction, we see political institutions explaining simultaneously to those actors the actions they aim to take, by being involved in a communication with them and by being confronted through argumentation to them. Both argumentation and communication go hand in hand with the idea that policy is being driven and transformed through the tension between the individual dimension of the end of life and its collective representation. This relation of discourse to both the individual and the collective cannot be conceived without a notion of context12 that is also in tension: it is in fact a dynamic interaction of diverse social cultural or historical references with the particular emotional experience with the end of life. Context is not the only thing to change through time, space, culture, and development of ethical premises and societal narratives. The emotional experience is pivotal for understanding this change. It is the mode of perception through which one is able to recognize the other and exposes through this the individual organization of the surrounding world.13 Emotional experience is often the basis for our verbalizations of judgments and choices. It has a capacity to produce through negotiation between established and novel contexts reactions of antipathy or sympathy and to evoke compassion, love, fear, or hate. The question is here not whether we really feel something; the question instead is how the presentation of our feelings is enacted in the discourse and simultaneously arranges our experiences in a meaning that finally connects “grief,” “compassion,” “fear,” “hope,” and “joy” to specific practices. Emotional experience implies a liaison with practices acquired by specific groups or to be exercised in specific social interactions. Emotional experiences are part of the social history of a community and reveal their mode of interaction. They either support the meaning or they destabilize it. For example, the emotional experience of suffering patients who cannot endure their pain can serve as justification of their unconventional desire for euthanasia. Or it can serve as justification of their exceptional state of mind in that they should be guided by someone more lucid, an expert, as is often claimed by the argumentation against euthanasia. It is this interaction of emotional experiences and discourses that creates from intimacy a crucial part of Page 46 →agenda setting and of policymaking. It introduces both the possibility of consolidating and the possibility of transgressing the emotional experience in a different context that can change its meanings. The link between the individual and the collective dimension of the experience is made through acknowledgment. Identifying the Link between the Individual and the Collective The boundary of intimacy between the individual and the collective dimensions of the end of life is first materialized by the body. The discussion of practices of self-chosen death and palliative care practices can be seen as a discourse simultaneously about the use of the body and about possible forms of governing such a use. Bodily aspects are important for policy language, which intimacy—as a deep personal knowledge of the body and mind—shapes by combining individual emotional experience of the body with collective—and in that sense rationalizing—interpretations. We can see it in the often-discussed tension between the wish of the individual in how she wants to treat the body at the end of life and the acceptance of that wish in a collective context, by experts, family members, or media discourses. This often-evoked tension is not limited to one particular end-of-life choice: if one allows euthanasia as an expression of wills and wishes of the individual, there is always a possibility that those wishes will be

misinterpreted. Individuals might be pushed by the collective to pronounce such a will, or they might see that will as logical reaction to the collective discourse. If one denies the possibility of ending a person’s life in the name of that person’s dignity, there is a danger that the medical staff will be deadlocked in the decisionmaking, as well as the danger that the broader balance of public health-care systems might privilege some measures because of collective guidelines, thereby disregarding the individual. In both these examples, intimacy is a complicated threshold between the individual and the collective perceptions of the body that is presented through emotional experience. The dead body, the corpse, visualizes this threshold, on the one hand, through the religious or sociocultural context to which one adheres. Several rites and ceremonies are cultural responses to death that can themselves be explanatory triggers for the meaning of end-of-life practices (AriГЁs 1981; Douglas 1966; Turner 2008). Also, specific cultural objects—such as tombs and cemeteries—can witness a specific habitus of death and dying (Kearl 1989). We can see this also in the way that such rites Page 47 →and ceremonies initiated activities of hospice movements that are called to reflect on the spirituality and religiosity in which dying was once embedded and that have been lost in today’s societies (Falkowitz 2000; Walter 2008; Wouters 2002). On the other hand, the dead body visualizes also the combination of cultural and biological aspects of our ways of treating the body in public. We have seen the interaction of these two components in the development of the views of end-of-life choices alongside medical developments. Rather than engage in a discussion of the medical details involved in treatments, let us focus on the acceptance of this intertwining.14 Through medical innovations, through improved procedures of organ transplantation, the limit of death becomes problematized15 (as shown, for example, by Kaufmann 2015; Lock 2004; Hoeyer 2013). These problematizations have formed “leaky bodies” (as suggests Shildrick 1997) or have established the “bio-value” of body parts on the other hand (as suggests Waldby 2002). The body as we commonly know it becomes “decorporalized” (Lemke 2007), and this influences the regulation of end-of-life care by redefining what constitutes the margin between the dead and the living.16 Intimacy enacts these problematizations because “it is possible to trace a secularization of the body in which the body ceases to be the object of a sacred discourse of flesh to an object within a medical discourse where the body is a machine to be controlled by appropriate scientific regimes” (Turner 1987, 36), which is a discourse that accompanies scholarly analyses of the body.17 Turner’s argument makes explicit to us how the debate on the individual and the collective mediates, in fact, between rational discourse (ethical, medical, economic, social discourse on the body) and emotional discourse that concerns individual pain, incontinence, the loss of physical abilities, the loss of taste, the limited vital functions of the body and mind due to the dying process, as well as hope and the loss of hope, respect, shame, and other elements of the emotional experience with the body.18 This separation between rational and emotional perception of the body hints at the fact that dying is at the same time a specific personalized and innermost process that cannot be separated from its emotional aspect, including mourning. Without its intimate dimension, the societal discourse on death and dying would be incomplete. Examining the role of the individual in the process of complying with or detaching him- or herself from respective bodily standards, and dealing with the rational discourse of statistics, rates, can help us explore the tension that intimacy represents. Page 48 →This concerns, for example, the emphasis on pain, and the relief of pain that is predominantly discussed in current end-of-life care discourse; as we can see in the materials of the European Association of Palliative Care, which proclaim the latter as a “human right” (2010), or as we can follow it in experts’ discourse bringing forward the knowledge that pain must be assessed in palliative medicine (Brennan, Gwyther, and Harding 2008; De Lima 2012; and SlГЎma 2010). Interviews with both French and Czech hospice care staffers have revealed pain as the main issue for patients and their relatives. However, the same emphasis on pain is made by those who claim the right for a self-chosen death. Pain is then framed as an emotional experience with the body that is justifiably used in judging whether the person considers his or her life one with dignity. We can see this in the emphasis placed on the statements that the concerned people “desire” to die or “need” it. The other example, which can be also found on both sides, is the loss of bodily functions, labeled as the loss of

“life” as the person previously lived it. But here lies the problematizing character of intimacy: In any given society, there are certain collective practices of bodies that are conceived as normal, as opposed to other practices that can be labeled as “pathological,” “irrational,” or “too emotional.” All these emphases on pain and on other physical aspects are presented in relation to the normal discourse. I have often heard from end-of-life care staffers about requests for death by their patients that, for example, “these people mean something else” and “we have to listen carefully to what they mean.” These phrases typically assign self-chosen death requests to the irrational register. Other examples mediating in this way between the emotional and the rational part of the end-of-life story are discussed in the case studies. Intimacy exposes the key point between the acting of the individual and of the collective that passes through the experience of and with the body. In all these evaluations and judgments, a narrative intimacy is brought into an inherent relation with its surroundings, and not only in relationship to one’s own emotionality but, more importantly, to the emotionality of the other (as argue also Giddens 199219 and Zelizer 2005). But unlike empathy or compassion, intimacy implies that the collective has validated an individual’s emotional experience. Such validation not only is determined by history, cultural values, and social relationship but, in political terms, articulates power relations among policy receivers and policy providers. Addressing intimacy does not necessarily deal with the question of whether the feelings about a case spill over from one country to another, nor Page 49 →does it measure the causal effects of emotional experience in the development of controversy. The emotional experience with the end of life is important to us for the sake of shaping our knowledge about the body, affecting actors articulating their concerns and framing the organization of a particular policy regime. The intention is to depict the emotional experiences of patients, mourners, and experts as specific practices that unveil the process of acknowledgment of the individual emotional experience that a collective undertakes with the end of life. Intimacy as Shared Knowledge at the End of Life The language that passes all the way through the described negotiation becomes an important validation vehicle. The dispersed way of identifying end-of-life issues and defining particular practices reflects ethical and cultural discussions interfering with the terminological domain of medical science that are taken up by political discussions that very often merge ethical terms with medical terminology in order to highlight their arguments for new legislation or new demands to be posed. Such discussions—in the media or among policy actors—militate against any of us developing a firm grasp of the relevant terminology, since these discussions, which are often global, continually redefine established terms or quickly banish other terms when they become tainted through end-of-life controversies that cycle through the media. This means—in practice—that already established terms can be further diversified and that some terms may be abandoned over time because of their pejoration through historical events. Let us take the example of the word euthanasia, coming from the Greek eu-thanatos, meaning “good death, ” which has been labeled in modern times as an autonomous form of self-chosen death that witnesses a certain intellectual autonomy (Amarasekara 2002).20 For example, the UNESCO Bioethics dictionary of the Eubios Ethics Institute, which represents the collective work of internationally established ethicists, defines euthanasia as “the merciful hastening of death, often limited to willful and merciful actions to kill one who is injured or terminally ill” (Macer 2003, 178) and places euthanasia in the general category of “allowing to die,” which is understood as “the withdrawal or withholding of life-prolonging treatment” (Macer 2003, 7). The “Allowing to Die” category includes the more or less passive practices of advancing death, such as do-notresuscitate orders, nutrition withdrawals, and dehydration, which some countries’ legislations distinguish from self-chosenPage 50 → forms of death. What is noteworthy here is also the emphasis on “mercy,” which encompasses the idea of dignity within the practice of euthanasia. Similarly, “withdrawal” suggests that this practice is, or should be, a reaction to a patient’s state or the expression of his or her will, and therefore respectful to individual autonomy.

Another example of the terminological diversification is the abandonment of the term euthanasia in Germanspeaking countries (and instead using Sterbehilfe—“help to die”) because the Nazi T4 Program referred to Euthanasie in connection with the systematical killing of mentally and physically disabled persons during the Third Reich (Winter et al. 2002). All lay and expert discussions try to distinguish the practice of self-chosen death from the Holocaust in Europe or other types of genocide, or from any kind of misuse associated with the idea of ending a person’s life. Quite often the reaction is also to speak about “assisted suicide” rather than about “euthanasia”—the Czech legal initiative of the nonprofit Euthanasia–Good Death is such an example, where the policy proposition uses instead the term “assisted suicide.”21 The medical community, for its part, often claims that it is highly complex and sometimes impossible to distinguish between “allowing to die” and “self-chosen death.” Chapter 4 reports French discussions in reaction to the critique of the end-of-life law and shows how the subtle and sophisticated terminology distinction between “accompanying someone” and “assisted suicide” has framed the debate of both political and medical institutions and how this subtlety has circumscribed their radius of action. Quite typical of this complexity is the distinction between “active” and “passive” euthanasia, as some experts claim that there cannot be anything “passive” about a self-chosen death, whereas other experts may use this distinction as a way to open cleavages in the debate in order to enable a form of self-chosen death that is still controlled (see Reichenbach 2007 and Lindsay 2013). On another aspect of the difficulty of this distinction, one Czech palliative expert explained to me that it was challenging for him to introduce into the Czech context the palliative vocabulary he was accustomed to from his practices in the United States and in Belgium, as the words might have different sounds, contexts, and tones and are “difficult to translate” (interview CZ 5). He gave the example of the subtle borderlines between “overtreatment,” “therapeutic obsession,” and “obsessive therapy.” Often, international discussion might be the reason for the introduction of a novel term. The terms are also debated differently depending on whether some law on the end of life is already in practice, as in France, or whether actors are still debating propositions,Page 51 → as in the Czech Republic. The global context is so important because it depicts national differences in the use and development of these terms. All these discussions are reflected by the media and by mourners and patients who connect them to their emotional experience with death and dying. We often hear the dismissive response “These are just words.” Hence, if that is the case, why do we still stick to them? Why do we want to hear a simple “I assure you there is still some hope” after having been examined by the oncologist? Apart from Austin’s performativity of language (1962)—by which he holds that words are deeds in themselves because they initiate actions as well as perform practices—we can look at these words as specific constellations of who says what and where that matters to us. Words shape the values and organize miscellaneous perceptions and imaginations in arguments or practices we take part in as citizens and as political actors. This is what is being offered to us in the public proclamations of terminally ill patients who request euthanasia or advocate against it. We see here constellations of words shared with the collective in a particular way: a specific constellation of a context (the end-of-life situation that has its cultural and sociopolitical background) that is reflected by the (suffering) subject who calls for compassion, and finally we follow the particular mode of language that these persons use and that reflect both the subject and the context. In that perspective, Terri Schiavo’s husband’s statement, “This life is not worth living,” and Vincent Humbert’s “I claim the right to die” are not just words but words that recall specific emotional experience and that ask for acknowledgment. We see the same sort of constellation also in diverse moral statements made by religious or political authorities that advocate for or against euthanasia. If we consider the discussion around the end of life from the angle of the acknowledgment of these emotional experiences, we see that discourses can reveal to us the dynamics that acknowledgment enrolls. When speaking of the end of life, we usually do not evoke the intimate dimension of the particular emotional experience because, as both the religious and the philosophical thinking of Western societies have taught us, this area is one where the individual stands utterly alone. However, as the cited cases show very well, this intimate face of the end of life is constantly shared with the other, notably in the way it is respected, discussed, or opposed by others. We can

therefore follow in end-of-life controversies the modes in which the emotional experiences with death and dying are shared in order to see the intimate face of end-of-life issues. Page 52 →End-of-life controversies touch upon the social environment in which dying occurs, or should occur, and reveal how dying affects our lifestyle choices. End-of-life concepts stem from both the cultural and the social contexts of how we imagine dying. In short, the end of life is shaped by discourses. However, because that period is also highly emotional, the emotions surrounding the end of life have challenged the discourse. Emotional experience involves a social dynamics by which how we live is related to how we feel and, consequently, to how we are engaged in the representation of our lives. It follows that intimacy establishes rules of interaction that imply reciprocal emotional involvement of individuals through which the intimate knowledge about one’s own body and mind is validated. Intimacy responds to a specific collective understanding of emotional experience that is incorporated in some established practice and thereby serves to justify collective actions for or against a particular form of end-of-life decision. This validation of the emotional experience can pass through affirmation, refusal of some actions, or a conflict. It means also that the intimacy of dying is simultaneously the dimension of how dying is interpreted, which we can see in the domain of end-of-life care, where the requirement for intimacy has changed both the practice of care and the representation of “good dying.” Inpatient care reacts to the fact that a patient now spends more time in hospital settings by engaging in more intensive communication with patients (such as personal consultations with patients facing difficult prognoses) or by increased integration of family members in care, for example, allowing relatives to be present at the bedside. Family members often participate in patients’ therapy or care for them when they are released for a weekend or other period. To be emotional, to be empathetic, has in fact become the necessary standard for the “good” practice of care. At the same time, this validation has not replicated the original emotional situation, as we know from family contexts: end-of-life care experts emphasize that they are only “visitors” to patients (interview CZ 1) and are not there “to judge anything” (interview FR 17). Intimacy is considered twice in policy: as knowledge reflecting the sociopolitical and cultural context of governing and as a self-governing device that problematizes, and eventually transforms, the context. By that token, we regard “policy” as the knowledge that integrates emotional experience because this experience is shared by particular people and in a particular way. That is how intimacy then serves as acknowledgment for particular practices and acts in agenda setting or formulation of a policy. Page 53 →

Rethinking “Polity”: The Role of Self-Governing Practices Debates about the end of life also redefine the community that once justified the knowledge, be it the religious or cultural community, the state, or the expert delivering knowledge for policymaking. Trying to regulate the end of life is much like closing a Pandora’s box that can be opened elsewhere.22 End-of-life controversies can be reopened, either in other countries, where they may be used as pressure instruments on national legislation by activists, or they can be opened by emotionally loaded stories orchestrated by the media in conjunction with the activists. The policies do not emerge from a moral top-down obligation, but these obligations of state actors to act are negotiated from and within individual stories, practices, and meanings that are shared. To evaluate how policy is rearranged based on which end-of-life controversies are carried out on the political stage, let us start by examining the impact of religious authorities. The current Western discourse has turned end-of-life controversies into secular controversies that here and there take on a religious tone. The secularization has contributed to establishing bioethics23 as the discipline that primarily contributes to the ethical and spiritual debate on how “good dying” should be conceived and by whom it should be evaluated. Bioethicists have sustained the secular story of end-of-life issues by religious and spiritual discourses that have been introduced in states’ legislation as their constitutional principles. This relates mainly to the secularization of autonomy and dignity, which had previously been understood as religious but are now considered supranational universal civic values of the Western world and as institutional guarantees of liberal democratic society.24

Bioethical committees worldwide have proposed coherent ongoing reasoning advising about “good dying” not only within the secular context but also within the global context. These committees have replaced, to a large extent, the previous importance of religious institutions precisely because they have been able to act at the transnational level, thereby representing Western postindustrial societies. They have the status of expert knowledge that can be used by state actors, various stakeholders, and policy advocators around the globe because they deliver significant transnational data.25 In such a situation, where citizens form a community that shares values apart from the erstwhile territorial contours, the state as we know it necessarily becomes a somewhat mythicized abstraction, something that has neither Page 54 →unity nor long-term functionality when it comes to legislating about end-of-life controversies. Allowing or forbidding does not have an absolute impact, as we have seen in the case of the Swiss organization Dignitas, which provides assisted-suicide services for foreigners, thereby demonstrating the irrelevance of national borders. Either the citizen is free to travel to another country to die, or he or she receives through the Internet and other electronic media information about practices not allowed in his or her country.26 The transnational character of the debate implies as well that citizens share their values outside of traditionally understood hierarchies. We therefore must delve further into the relation of the state with the individual in order to understand the rearrangement of a polity. The mutual engagement between the collective and the individual has been granted greater voice in the policymaking, and intimacy enables us to see the nature of this engagement. Each end-of-life policy, no matter what it dictates, aims at controlling the use of one’s own body within a discourse described earlier in this chapter. The underlying power mechanism goes back to Foucault’s biopolitics27 (1976, 1999), which supposes implicitly a notion of death as an apparatus that organizes society. Whereas traditionally the monarch had the power to make die (to execute)28 or to let live (to grant amnesty), the modern rule has reversed the logics. It distinguishes between making live (to care, to nourish, to support) and letting die (to abandon, to let go, to leave). Foucault calls this a caesura between the traditional and the modern power over life and death (Foucault 1976). However, this does not mean that state institutions would impose this control on the individual. Biopolitics renders visible a control mechanism by which the individual integrates governing strategies in his or her life to achieve a notion of good dying that he or she believes in. This happens within discourses, which are a grid of norms, narratives, and practices.29 This mutation in power is crucial. As many scholars inheriting from Foucault’s biopolitics have already shown,30 defining these criteria is at the heart of the political debate because it entails questioning where to draw the line between what is “normal” or “acceptable” and what is not. For our purposes, it exposes the line between rational and emotional knowledge.31 On the one hand, the institution offers a counterpart to the individual because it provides “security” for its citizens. In that sense, the specific setting of health-care institutions responds to security not only in terms of developing a sufficient number of end-of-life care units, introducing specific end-of-life health-care measures (pain medications, screening mechanisms, Page 55 →etc.), but also in terms of defining bioethical principles of respecting human dignity and autonomy. Security builds a grid of conformity determining what is the right thing to do and especially what is the right thing to feel. Who is to be “made” to live, to be treated and cured, and who should be allowed to die is then a way to classify bodies that are judged along the discursive scale. On the other hand—and this is crucial for the role of individual in this discursive scale—death and dying can be seen as both establishing and disturbing the social order in concert. With the destabilization of how death and dying had been considered, and by whom it should be considered, however, not only does the authority take part in the competition32 by being more interactive and communicative with the individual, but the state relies heavily on the individual him- or herself. This double effect alters the way in which the borderline between making live and letting die is handled by self-governing practices. Governing Intimate Knowledge It follows that intimacy has a crucial role in the creation of entitlement or of responsibility of a policy actor because it affects how the individual integrates—or does not—the evoked governing strategies. An actor’s status, his or her historical and contextual contingency, leads us to the analysis of meanings via social relations

that exist in a particular society or particular social group. This is at the core of RanciГЁre’s idea of empowerment strategies in politics that pass through the acquisition of knowledge by those who empower themselves and through realizing that this knowledge matters (RanciГЁre 2004). This idea helps us to understand how the individual acquires the governing strategies.33 Particular discourses on the end of life are therefore related to the register of responsibilities, that is, who becomes responsible for what, and who can consequently claim or do what.34 Existing relations between politicians, health-care experts, and bioethicists point to the link between this importance of the knowledge and the social status of the one who presents the knowledge, thereby showing us how the establishment of this status necessitates acknowledgment. Such a relation can be followed via bioethical and medical expertise, where the interactions between authorities and the lay public have shown that the governing authority must explain its position in order to enhance the legitimacy of the actions it takes. The authorities are just actors among others and enter into communication with media, nonprofits, activists, blogs, Internet Page 56 →forums, and so on. In order to receive the necessary acknowledgment, they have to perform their authority. In this way, intimacy becomes a self-governing technique of the individual. The necessity of acknowledgment that intimacy implies goes hand in hand with the democratic requirement of a society, in which actions of authorities cannot be implemented without the public’s legitimacy.35 This necessity then disturbs the apparent dichotomy between the “emotional” side of the debate introduced by the individual or the lay public and the rational side produced by institutional bodies. In fact, stories of suffering patients claiming their right to die have the same status as do reports by experts who warn against the moral consequences of such a claiming. The reorganization of social hierarchies and interactions reminds us of the necessity of a negotiation implying the acknowledgment of the emotional experience within the community. This involves authenticating the experts, which occurs through the explicit naming of emotional experiences associated with the end of life.36 This erosion of authorities sets the stage for an enhanced role of the individual, who acts henceforth consciously through and with intimacy. Citizens are engaged in a new mode of responsibility toward what they think and what they do. They become partners with institutions. This means concentrating on a particular end-of-life decision as a choice for or against a particular bodily practice that is communicated through the emotional experience with the end of life. From the point of view of the polity, intimacy is the link in the dichotomy between public and private and, as such, it illustrates the governing process of the institution because the relation between the intimate and the public traces at the same time the space within which the institution can act and within which it should retain itself. Intimacy reframes proposed social and economic requirements (as show Achterberg 1989 and Zelizer 2005) and stimulates the individual not so much via “control” in terms of state legislations and institutional regulatory practices as through the disciplinary self-governing process of the individual: that is, through a discourse that the individual “believes” or “accepts.” Both empathy and compassion have been previously investigated by policy scholars as social instruments that foster these self-governing strategies. The other who suffers or who needs help constituted the meeting point between the moral requirements governing a civilized individual and the political promise of liberal democracies. Compassion has been seen as a vehiclePage 57 → of the self, which might be primarily drawn by its own interests but whose compassion requires that it not hurt the other, that it respect the other’s personal integrity. Empathy enters as a vehicle of the self, helping a person to understand the other, to see another’s needs, and to translate them into protective practices and regulations. Both compassion and empathy can therefore be seen as supportive instruments of institutions that regulate the end of life because they formulate the requirements for the autonomy and dignity of citizens at the end of their life.37 Through its embrace of the sharing of emotional experience, intimacy suggests going beyond these notions to stress the mechanism of public power through which these requirements are ranged in the institutional landscape, expecting of citizens that they act and feel in particular ways. Intimacy directs primary attention away from

institutions and toward citizens because the citizen becomes the dynamic core force that affects collective meanings of the end of life and that organize these meanings through individuals who want to be more “listened to” and “acknowledged.” Citizens have to be listened to and acknowledged because the logics of policymaking requires their acceptance of the legitimacy of the political measures adopted. Intimacy as a Legitimate Requirement for Autonomy and Dignity You enter the room and begin to answer questions about your family history and about your lifestyle. Questions about smoking and drinking, what medications you take, and what illnesses family members have create your personal health profile. It is a good sign when you give the impression that you know what your health risks are, when you know the benefits your medications provide. Such conversations are not restricted to genetic tests or immigration health controls, but rather help build the core of the current practice of health care in Western societies. The individual is in the middle of the health-care discourse, because the individual gives consent to specific care but does so after consultations with physicians, experts who justify the care the individual has chosen. As Dominique Memmi (2003) explains in her interpretive excursion into abortion practices in France, the increased role of the individual in decision-making regarding medical care is one aspect of giving “a few good reasons” that are necessary in order to argue why the patient can and wants to receive a particular care. The individual is to be respected but has to demonstrate the capacity to earn this respect. There has been a shift in epistemic authority from institutions to the argumentationPage 58 → process of these same institutions, through which they aim to gain this authority from the individual. Formats of knowledge other than scientific or expert ones have become more important, and there is stronger engagement of the individual because health-care organizations are making more effort to engage citizens in health-care decisions and because health-care workers are making greater effort to engage their patients in determining the course of their care. Together, these individualizations have promoted a more sophisticated system of justification than the traditional confirmation of the established status of an expert or a policy actor. The individual has more power and more responsibility over his or her care choices, and the related self-governing technique has two sides. On the one hand, individuals gather on their own the necessary information about their health-care status. On the other hand, they are increasingly invited to do so through consultation with experts who treat them as partners and through financial programs that make the individual responsible for (at least) part of the health-care costs. If an individual shows capacity for self-responsibility within the medical context and conceives of his or her life as a strategic enterprise (Nettleton 2000, 213–214), the formulation and implementation of lifestyle choices is equipped with more individualized techniques of discipline and control. This relation changes the attitude of the individual toward care by making him or her more autonomous.38 The autonomy becomes internalized and governs the triage of the plurality of knowledge that the individual has access to via experts, laypeople, and the media. These self-governing practices combine autonomy with dignity. In its liberal democratic shape, autonomy is translated to the requirement of individual responsibility for one’s own life.39 Once-unquestionable premises become problematic when facing the idea of self-chosen death and the too-frequent cases of overtreatment of dying patients, although both poles of the treatment spectrum can be supported through the same notion of autonomy. Autonomy is then far from being only a rational capacity of the responsible individual, instead turning out to be an emotional category framed through particular imaginations, fears, sympathies, and references that the individual gives to the perception of the surrounding world. The wish to die is negotiated between what the individual “can” do in order to achieve what she “wants” and between she “must” do in order to realize that desire. This does not mean that the inclusion of emotion would certify the “cost-benefit” consideration; rather, it means that the nature of this considerationPage 59 → cannot exclude emotional experience. It further means that to be responsible means to acknowledge the emotional experience. The notion of dignity, for its part, has been crystalized as a liberal democratic device to protect those who cannot protect themselves because they have neither the economic power nor the sociopolitical power to do so. As Agamben suggests, the current debate on self-chosen death departs, in fact, from the ontological paradox of

defining the act of killing someone not as a murder, punishment, or genocide (Agamben 1998, 174), but as an expression of “mercy” (see also Dworkin 1994) and, most importantly, as an expression of “dignity.” However, even dignity has become twisted as it has begun to support the idea of individualized care projects (Thomas and Lobo 2011). Be it in terms of financing or in terms of individuals assuming the organizational task of an institution, dignity ceases to be solely a device to protect, and instead becomes a driving device where the individual—again, responsibly—searches to protect him- or herself. The handling of the borderline is more “chosen” and more “intimate.” Such a twisted notion of dignity has been coproduced through state policies, for example, through the imperative of demographic changes in the society. Media stories about people permanently connected to machines or disabled people who fear the loss of dignity, changed the patterns of formulating their needs by giving them an individualized dimension. Personal stories are offered as emotional icons on how the end of life is experienced and subsequently which emotions are normal, allowed, or simply acknowledged. Intimacy, on the one hand, enhances the autonomous spirit of the individual in that she deals with the body in the way she wants to. Nevertheless, the individual him- or herself is placed within the negotiation in the collective or toward the authorities (physicians, experts, etc.) in order to claim and declare dignity. Therefore, intimacy implies a responsibility that is mediating between these two values. Within the polity dimension, intimacy can be then read as an acknowledgment and demonstration of deeply emotional self-reflexivity—this gives room for a certain “emotional choice” of the individual and reflects, at the same time, the importance of “argumentation” and “performance” on the part of the collective. This brings a shift to acknowledgment as a way of arguing and communication and transforms, little by little, the dynamic of a negotiation process.40 I explain in the following section how policy and polity, both being defined through intimacy, engage a specific dynamic of “politics.” Page 60 →

Rethinking “Politics”: Heading the New Dynamics of the Policy Process Alongside the eruptive character of a policy around end-of-life issues being challenged through the boundary of the individual and the collective, alongside the eroded polity setting up a self-governing practice that needs to play simultaneously with autonomy and dignity, we must consider the particular dynamic that accompanies current end-of-life controversies. This dynamic appears first within the formulation of a policy, when pros and cons enter the negotiation of what is the issue at stake: it is through end-of-life care discourse that euthanasia comes to be discussed because it is framed, or shaped, as the “opposite” of end-of-life care. It is through the discomfort felt and experienced in the end-of-life care that claims for euthanasia or assisted suicide emerge, and they are brought into the public discourse in this way. Moreover, every policy in any country owes something to a policy in some other country, be it through emulation or through opposition of already established terms. Considering reciprocal opposition and related mutual engagement core for social analysis is not entirely new. The anthropologist Mary Douglas (1966) shows in her analysis of pollution and of the taboo in society how categories that are granted as a privilege by religious or other institutional settings are accompanied and challenged by individually framed discursive practices that render them acceptable in the collective.41 The current explanatory theories working with institutions, such as those of Mark Bevir,42 or the studies on governance by Eva Sørenson and Jacob Torfing,43 have emphasized that the institutional structure, challenged through individual actions, needs this engagement de facto.44 In light of this reorganization of power,45 institutions change their roles to become coordinators of the individual agencies46 governing through discourse. While engaging with the reciprocity of individuals and institutions, discourse is a way of gathering meanings and actors who pronounce them. Some works of interpretive policy studies have stated the increasing importance of “rhetorical,” “dramaturgical,” and other argumentative devices.47 All these devices in some ways touch on the politics of intimacy, because they all include the individual’s emotional choice as the moment from which the argumentation is deployed, even though they do not specify it as emotional. The role of acknowledgment of emotional experience becomes visible

in the particular labels that actors use while abandoning some argumentsPage 61 → or claims as “irrational, ” “too emotional,” or “irrelevant” because they want to tame them. The “politics of intimacy” appears as a policy regime bringing forward a dynamic of governing that henceforth accommodates emotional experience in some way, based in the transformed nature of policy and reorganized polity. Several ways of accommodation can be observed in current end-of-life debates: establishing large information missions, organizing citizen conferences, experts networking in joint statements as well as relying on transnational expertise or on opposition toward another state’s legislation in order to show that the decision is not just a deliberate act of one single state authority but instead is a decision that we share. However, by doing this, political institutions plunge deeper into the conflicting boundary with the individual precisely because they touch on the emotional experience and argue for or against it. The result is that all possible conflicts become even more controversial than they were before. In order to understand this paradox, we have to understand how the politics of intimacy encompasses technologies of institutionalizing a practice within a collective with and through the individual emotional experience. This explanation closes the triangle of policypolity-politics and leads us to the analytical agenda that involving intimacy in politics henceforth implies. Toward a Politics of Intimacy Why should policy analysis concern itself with dissatisfied relatives who are unhappy with the state or with the situation their dying loved ones are in? Addressing collective understanding of the end of life through its focus on the innermost sphere of the individual, intimacy affects the way institutions govern this matter. Media coverage of the last decades has shown us that bringing to the fore the emotional experience with death and dying seemed to offer a solution apart from cultural, ideological, and religious argumentations. The generally enhanced role of communication practices in policymaking has supported this promise. Intimacy has stepped out of the private sphere to become the main vehicle of the mutual engagement of newly defined roles of both citizen and state actors, holding that politics is about what matters to whom and how. The question in this section concerns the “how.” Intimacy invites us to elaborate on the public power technology stemming from the rather conflicting position of a citizen toward the state. Despite these developments, the institutions—the state or the health-care Page 62 →center—that since the Enlightenment had been accustomed to the rationalizing techniques of governing the life of the individual, seem to still play the housekeeper who does not want to surrender the key. They negotiate, hold public hearings, but then deploy a moral discourse to try to resolve the controversy. They claim to want to listen to citizens’ views but then label the claims of dying patients as “irrational,” paradoxically trying to dismiss exactly the intimate aspect of the end of life that they were asking for. The politics of intimacy points therefore, on the one hand, to all these modifications in politics that erupt once intimacy is debated in public. This view seems to imply that “intimacy” could become a new mode through which politics could operate to settle the controversies. On the other hand, individuals seem to be discomfited almost by definition because their emotional experience with the end of life must ultimately remain exclusive, which makes its collective acknowledgment impossible. We will see Czech nonprofits and activists building an initiative of sharing the experience, boosting thereby the presence of intimacy in the end-of-life care, out of a fear that intimacy would get lost if the state were to try to incorporate it in its actions—as if the discomfort were needed to keep the nonprofit’s underlying theory legitimate. The “politics of intimacy” then presents a complex policy regime that is founded on this permanent tackling of institutions and individuals that can never be solved. The Mr. Hyde monster of emotional experience has to stay a monster—otherwise, the very foundation of both the exclusive character of death and dying in Western liberal democracies and the legitimacy of their institutions would be lost. The Politics of Intimacy as a Dynamic Relationship between Emotions and Discourses “If translating suffering into words calms anxiety, anxiety itself becomes untranslatable.В .В .В . But if such

words are thrown into the public scene, they become fixedВ .В .В . in a judgment.”48 If I have described the “politics of intimacy” as a policy regime through which on the one hand it is possible to accommodate “emotional experience” as a component of the meaning of “good care” and “good dying,” but which, on the other hand, brings politics to the unsolvable boundary between the individual and political institutions, the next step must lead toward the analytical consequences of this characterization. The “politics of intimacy” invites us to observe the political as a Page 63 →process of permanent becoming, reflected here in the term “institutionalized practice.” The sharing of meanings, ideas, and views and related consensus is not conceivable without negotiation; negotiation is not conceivable without the plastic dimension inherent to communication. The “politics of intimacy” is a policy regime that starts from the notion of intimacy as an individual negotiation but places the latter in the negotiation with the collective. The main interest lies therefore in the way intimacy frames institutionalized practices, changes it, destabilizes it, and tries to find some equilibrium. My research curiosity was particularly piqued by the way the end-of-life controversy was framed, in a story of coping with a loved one’s end of life, by these mind-sets of willingness to put the death behind them. Respondents characterized health-care providers in one of two ways: either as those who “helped” or as those who “disturbed.” The actual emotional state of the respondent displayed his or her specific emotional experience, which exposed what he or she felt to be the good or the bad elements within the health-care network or the public regulation network in general, and why they felt as they did. Respondents judged networks based on their emotional experience, as evidenced in the quotation above. Institutionalized practices highlight the potential of being reframed by the other state’s policy or the other expert opinion or advocacy group. Unlike an “institution,” the notion of “institutionalized practice” is more able to mirror the plasticity and relativity that inhabit the very notion of the political, and to reveal the recent development in the observation of “state” and “institution,” especially in the aspects of reframing tendencies in the observation of governing outlined earlier in this chapter. At the same time, the term “institutionalized practice” visualizes the processes through which discourses become institutionalized, that is, through argumentation, through communication, and, most importantly, through intimacy. The term reflects the changed political dynamics that function in networks and through governance. Discourses gather meanings and serve as a way of justifying the actions of institutions.49 Nevertheless, against the zeitgeist of plurality and relativity, I argue that what we face is a plurality of “institutionalized practices” within which (and only at a specific moment in time) the discourse is performed and the emotional experience is justified. In this perspective, discourse functions as a trampoline: it launches an interpretation and, by doing that, systematically bounces other interpretations aside, even penalizing them as incorrect or Page 64 →“dangerous,” or positions them at the margin. Specific policy on the end of life is therefore the outcome of these interdependencies and appears as a practice that can be contested and renegotiated. Intimacy can permit the observation of a constellation through which the discourse holds together and persists among specific actors, whereas it is denied by others. By conceiving discourse in this way, first, we are confronted by various constellations of three elements—subject, context, and mode of language—that witness a certain historicity but that simultaneously respond to the present, to the invention in which they have to be justified. The institutionalized practice incorporates norms and beliefs that are carried out both by established practices and by new patterns of thinking that challenge these practices. The institutionalized practice shapes social practices and is itself shaped; it acknowledges and is itself acknowledged. For that reason, institutionalized practices that are “at the edge”50—that is, that redefine common notions of life and death—are of interest. This sort of clash between common and uncommon is particularly interesting if we want to see what elements hold these practices together. The connection with the institutionalized practice can be either conventional (confirming and justifying this practice) or inventive (developing the practice further, changing some aspects of it or going against it). Second, we can analyze the political with respect to the strategic aspect and link, the discourse (which

incorporates values, beliefs, and emotional experience), to the positioning of actors and the underlying governing structures. Viewed in that way, end-of-life issues are being renegotiated because the contexts in which they have been understood and operated are being transformed by intimacy. Analysis of such negotiations—including intimacy—is then the explanatory path that can show us the mode by which some arguments become part of the institutionalized practice and some do not.51 Moreover, this perspective elucidates particular practices and the path by which they have become or are to become. This highlights that the politics of intimacy can be used as an analytic frame that makes the relationship between emotions and meanings more dynamic. At the same time, the emotional environment felt by mourners is formed by the society that confers specific meanings to dying and to grief. This meaning is influenced by the normative importance accorded to the dying of our dear ones and by the role of emotional experience within the particular sociopolitical context the respondent is reporting on. In the view Page 65 →of the institutionalized practice, the externalization of sadness and weakness can be treated as the reaction to the context, as something to be recognized as supplementary or in opposition to the common understanding, and stereotypes. For example, phrases such as “Calm down” and “It will be OK,” which we know generally from diverse communication situations in which emotional externalizations occur, point to the fact that the externalization of emotional experiences is a disturbing element in the public sphere. This experience nonetheless must be tolerated, and the way to tolerate it can be drawn from mourners’ stories about how the environment has treated their emotional externalizations. We can first consider the conventional side of such phrases as “It will be OK,” evaluating them in relation to the inventions observable throughout the fieldwork. Invention comprehends the way particular texts respond to those conventions. Conventions are generally identified either through modalities (e.g., “should,” “it is normal thatВ .В .В .”) or through symbols, myths, language idioms, and emotional externalizations. But the next analytical step consists of identifying if and how the respondent complies with the convention (and why). Does she reject it (and why)? This enterprise includes explicit analysis of current legislation, religious and cultural backgrounds, financial and technical possibilities, related emotional narratives, social history, and the history of the involved actors (e.g., their institutional background, specific properties of nonprofits, the social grammar of the acknowledgment, and acceptance of emotional experience, media, or virtual technologies). By that approach, the analysis again links topics and actors in the triangular configuration of subject, context, and the mode of language. The “emotional experience” is engaged in the treated topic as well as through the analytical proceeding of the researcher. This emotional embedding again stresses the necessity of distinguishing conventional meaningmaking procedures from various inventive forms of communication. Whereas conventions might assume the form of linguistic norms, communication stereotypes, social practices, or formal procedures, the invention elements are generally not that compact. An invention can be the individual statement made by a person who is opposed to his or her own community. An invention can also be an organized group of people (activists, political movement, etc.) that is opposed to a policy or policy proposition. The degree of the organization of such a group is not given, and as far as the conditions Page 66 →of emergence are concerned, this group is either formed ad hoc once the debate is launched, or emerges through the reframing process of a convention that now appears to be intolerable because something has changed. This leads us to its further differentiation. An invention can be a new idea that is brought into the context and the mode of language and that reshapes structures and procedures. An invention also can happen on the level of the context itself and may have an effect not only on the formal procedures but also on the persistence of ideas or on the creation of new ones. An invention can concern procedures; it can be the mode of language that has been changed within a specific context in relation to specific ideas. The invention can therefore concern just one part of the policy regime but can subsequently have an effect on the other elements of policy process: The idea (policy—the subject of communication), the structure (polity—the context of communication), and the procedure (politics—the mode of language used in the communication) are intertwined. Crucial for this tension is that the communication passes through the acknowledgment of the emotional

experience. The emotional experience may be seen as conventional, appropriate to the particular context (such as communication situation or context of the topic that is communicated). Alternatively, it may be seen as inventive, as disturbing the common context; the way this disturbing aspect affects the development of the particular debate is the matter of analysis. The emotional experience is outweighed in the same way when it comes to the subject, to the nature of the actor who communicated, or to the stylistic procedures through which actors communicate. Deciding that something is “too emotional” or “not emotional enough” relies on this interactive tension between conventional and inventive. Similarly, the speaking subject—the individual—outweighs the context that is conventional in a situation and what she feels could be done differently: the individual governs the institutionalized practice by his or her own requirements, by oppositions. An individual search for deficiencies in conventional discourses by claiming his or her erroneous sufficiency and satisfaction. What is important for the related interpretive inquiry is that the speaking subject is claiming it through pointing to emotional experiences she reports on in a text or during an interview. End-of-life issues reveal this interactive tension as they are coproduced by conventions as well as by different configurations once the topic is reframed or redefined. This can, for example, be done by the state that incorporatesPage 67 → a legal norm that initiates certain domination of one institutionalized practice (without completely disregarding other practices). The state comprehends diverse contexts—religious, social, political—that incorporate different practices. The analysis looks at those practices and frames this tension as the interaction of the subject context and mode of languages that enables and incorporates specific “communication contracts” described in chapter 3.

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Chapter 3 Analyzing the Politics of Intimacy Cultural myths, symbols, and language idioms such as those mentioned here in descriptions of the current stage of end-of-life controversies identify to a certain degree a specificity: of a community, a social group, or an advocacy group. They can be observed through meanings and practices, all elements of what have been abundantly defined as “discourses.” To be able to identify these, the researcher is invited to enter the world with different eyes and to expose the discourse with all its elements. Such thinking is, in its ontological fashion, a way to compare1 different communities, different views, or arguments, but it does not engage the debate on “norms” or on a “good” or a “bad” practice, nor does it have a predictive character. The opposing ways of saying or doing things reconstruct the implicit and the common sense of those groups, and by doing that, the analysis exactly strikes the postulate of a “normal” or a “good” in its absolute sense of the word because the analysis explains how views of “normal” and “good” are enacted and argued for, by those who claim and advocate them. These discursive relationships of meanings and practices are called here “institutionalized practices.” The specific events and individual stories about the end of life reveal the practices that have become institutionalized within a community. Their articulation is apparent either in a specific way of doing things (arguing for or against self-chosen death) or in a specific, socially acceptable way of saying things (“accompanying someone” instead of “assisting him in dying”). The analysis of institutionalized practices shows how cultural or historical customs and habits enter our everyday life, how they might change through supranational contexts in which liberal democratic orders increasingly act, and how all that equips us with specific interpretive lenses to explain and understand these phenomena. Studying institutionalized practices goes thus beyond simple inspection Page 70 →of the nature of the everyday experience we have as French or as Czech, as those who suffer or as those who care for those who suffer. It involves studying changes and contestations in these experiences to unmask the discursive registers that hold them together. As we have been reminded by interpretive approaches, discourse does not mirror our world but instead coproduces it and reshapes it. The same can be asserted here about the role of emotional experience in these discursive registers. France and the Czech Republic are then respectively each the settings for institutionalized practices that assemble cultural, social, and historical aspects but does so through different references to intimacy. The analysis begins with the observation that new demands occur in the field of end of life and inconveniences are supposedly dealt with. It traces the (re)negotiation of these inconveniences so as to show larger sociopolitical conditions that are either conducive or not conducive to a particular vision of intimacy. Such analysis then examines which emotional experiences are acknowledged and which are not acknowledged; which are either part of the respective institutionalized practices or outside of it. It displays actors’ identities in end-of-life debates (“ignorant citizen,” “implacable institution”). All this analytical endeavor allows us to observe two sites of an astonishingly similar policy regime where institutions, while trying to satisfy these demands, grapple with intimacy in an effort to tame it in order to arrive at a solution. Applying interpretive lenses in the analysis implies at the same time embedding the reflection on the fieldwork and gaining respective awareness of a way of understanding the claims about emotional experience in both sites. Supported by ample field notes from hospices and public health-care centers and from interviews with patients’ families, public-health officials, and health-care staff, I integrate the difficulties in gaining access to families and caregivers of terminally ill patients, and in pursuing observations, not only sketch out the problems that may arise during such fieldwork, but show that interpretive analysis must be reflexive and must include the emotional strategies of researchers in order to depict the boundary the between the individual and the collective (see Amoureux and Steele 2015; Hamati-Ataya 2011, 2013; and Hutchison 2014). Such reflexive analysis of

intimacy considers the intersubjective embedding of the emotional experience used as evidence or an argument by the respondents (see Czarniawska 2015; DurnovГЎ 2015) and aims to show how this evidence or argument is interpreted by the collectives and why it is interpreted in that way. Page 71 →

Seizing the Field of End of Life My investigation was paved by intimacy, insofar as it was coproduced by my own emotional concerns for my respondents, reactions to the data, as well as my own personal connections to death and dying. Looking at this emotional content of the fieldwork leads us to the discussion of what interpretive research design can offer us, not only in terms of analysis but also in terms of the general embedding of these analyses in studying political phenomena. To begin with, the search for meanings and practices related to the end of life could not be linear or chronological because the end-of-life sites revealed quite the opposite. The Czech case concerned what end-of-life care should entail and what the role of state institutions should be, when legislative proposals on both euthanasia and provision of end-of-life care were on the table. The debate was not compact or systematic, but rather occurred as a result of international, media-nurtured events, and it reached the national agenda as a result of the efforts of the nonprofit Homecoming and its opponent, Euthanasia–Good Death. Similarly, France initiated a debate on the legalization of euthanasia in 2003 that brought together several actors, and that debate was by and large neither linear nor homogeneous. Quite the contrary: the dynamic of the French case has shown in which way pros and cons of the respective suggestions have been connected to the emotional experiences with death communicated during the debate by diverse actors and how actors regrouped when new cases were brought up in the debate. And again, the global reach of the discussion, together with an aspiration to find a supranationally valid solution, was driving the controversy. The nonlinearity of both cases exemplifies for us that emotional experience is, in Western discourse, evaluated as being difficult to seize.2 Notably, every respondent from the medical staff began the interview by stating that dying is difficult to talk about.3 Any emotional experience portrayed as “difficult to describe,” “taboo, ” and “intimate” can be grasped only if the other person permits us to see it and is able to describe it. In that sense, the interviews revealed that what we talked about is connected to how we talk about it and where we talk about it, and especially how we regard each other during the inquiry. This experience recurred not only with hospice centers and the relatives of dying ones; I experienced this also during my analysis of stakeholders when I interviewed policy advisors and parliamentary assistants. While conducting these interviews, I understood that interviewees’ discussionPage 72 → of their observations and the outcomes of negotiations was intimately linked to the institutional context they were embedded in, to their own claims of truth, and to their own imagination. When these respondents spoke about what they did, where they did it, and why they did it, they communicated their roles so as to convey that they felt they were under pressure: to act with integrity so their bosses could not be criticized by the public and with the awareness that any eventual harm could fall within their area of responsibility. Along with the evidence they gave, they also transmitted emotional experiences that supported that evidence. Against the three main topics of emotionally loaded situations that arose during my fieldwork, I outline the following three principles that played a crucial role when analyzing and interpreting emotional experience. First, the nature of the experience that respondents have been through transforms the structure of the interview. Second, the contact with the interviewee must respect the intimate sphere that appears, along with the fact that an individual emotional experience is constantly embedded in the collective understanding of that same experience, either within the interview or within the societal or cultural context that the respondent refers to. These components disturb the common image of a researcher being impartial, which leads me, third, to suggest adjusting and considering these aspects as parts of the interpretive inventory. At the same time, these three fieldwork arguments convey that the triangular threshold of policy-polity-politics should be reframed by intimacy and thus complete the theoretical framework by analytical consequences for addressing a particular site of end-of-life controversies.

Emotional experience usually occurred in two ways during the fieldwork: as phenomena appearing in the policy field or practices, and as the way to communicate these phenomena. For example, the emotional experience became an issue during negotiations with mourners about where we should meet and how we should proceed in the interview. The question of a recording device was even more delicate for this project than it usually is in interview situations. On the one hand, it was linked to the fact that I asked them to record their intimate experience; on the other hand, it was the witness of the incorporation of their institutionalized practice, which teaches them to handle all media and inquiries with great care. Regardless of whether I was interviewing a mourner or a policy advisor, I had to establish a position that would allow me to proceed in the investigation of intimacy. I was typically asked first what I have been doing professionally, and why I am interested in Page 73 →this topic. Practically speaking, the respondent preinterviewed me, a pretense that I submitted to in order to establish my position of awareness of the emotional situation at hand, and to be able to ask questions and discuss our topics openly. I particularly wanted to engage the larger spectrum of the practices and observations the respondents had made, concerning, for instance, the decision-making procedures of their chief or their team, the emotional environment in the information mission, and parliamentary networks that launched specific political agendas of policy formulations and policy implementations. To make explicit my fieldwork strategies in the analysis of both cases, let’s return more specifically to the interviews with Czech mourners. In order to see the boundary between the individual emotional experience and its collective embedding, I searched for cases and situations in which the practices around dying care lost their stability, where something “was not quite going OK” (interview CZ 24), as one respondent summarized her grandfather’s situation in hospital during his final days. I would use these difficulties to help identify the needs of those involved as well as the respective restrictions and settings established (or at least felt to be established) by institutionalized practices of end-of-life care. They were the vectors for possible ways of explaining the destabilization and restabilization of such practices as we witness them in the current Western discourse on the end-of-life controversy. This search was rendered difficult by the Western discourse, mentioned in chapter 1, of the sacred character of death. An assumption widespread among the media and among experts working in hospice care is that the practice of inpatient care contradicts the wishes and ideas that people have at the end of life. Respondents often revealed that needs are recognized too late to be resolved in time. As one of my respondents, a caregiver in a hospice center, reported: Once a lady contacted us.В .В .В . Her father has been lying on a couch for three days in terrible pain. His arms were stuck behind his head.В .В .В . She contacted the primary care physician, [but] he didn’t come and [instead] told her to call the hospital. The hospital told her simply to “bring him in.” But she couldn’t bring him there, because every single movement of his body caused him terrible pain, she said, because of those hands behind his head, she repeated again.В .В .В . I thought, “She’s hopeless,” and although I wanted initially to direct her toward the standard procedure, which was to call the emergency squad, etc., I finally decided to go there myself.В .В .В . She was really hopeless, Page 74 →unhappy, didn’t know what to do, because whenever she touched him, he cried out because of the pain.В .В .В . I found out that she had been really searching for help, but she was asking for help, not for a hospital. That was finally her point. She was afraid of losing her father by him being transferred to the hospital.” (interview CZ 4; emphasis added) Linked to this standard line about hospitals not being able to provide appropriate end-of-life care for most people is the narrative that people don’t want to speak about the “dark side of existence,” that is, the fact that we all will die someday, until they have no other choice because they are at that point. Every respondent pointed to this fact: until things came to a crisis point—“One day, my mother simply said she couldn’t stand up anymore” (interview CZ 15)—dying and the needs of the dying were simply not considered. At the same time, these needs, in their intimate face, are felt not to be communicated to anybody. I wanted to interview a woman whose story about taking care of her husband for two years had recently been published in a weekly magazine. Having asked for help from someone who knew both the interviewer and the woman, I was told that the

woman “probably wouldn’t speak to you about that, I guess. She just knew [the interviewer] personally—that is why she gave her consent to that interview.” Here the intimacy component is embedded in the concern of intimate communication during the interview itself, no matter how public or personal it might become afterward. This particular problem of gaining access to mourners marked my fieldwork because the data about these incompatibilities, the problems and inconveniences concerning end-of-life care, were closed within the intimate sphere of their own, protected even by the institution. For example, “We cannot let you speak to our patients—absolutely not” was the answer I got from one hospice administrator. This response was reiterated by staff at other hospice centers and care facilities. Investigating intimacy developed into a paradigm of the analysis itself, as I searched for a way to approach the field and to gain not just empathy for but also access to those I wished to speak to. It turned out that the very practice of accessing information was both connected to the emotional experience and limited by it, which finally led me to query the personal caregivers and close family and friends of dying people themselves, rather than the practitioners and professionals engaged in their care. Furthermore, as suggested just above, gathering information was not possible in the particular Czech hospice centers to which I had Page 75 →gained access. At the same time, the more I pondered the ways the inquiry should be integrated into the study of the political controversy, the more I noticed the incompatibility of the institutional setting in this field with compliance with or response to the situation that these people are brought into at the very end of their lives. After I engaged in initial conversations with acquaintances involved in the end-of-life care of family members, it became clear to me that the institutional inconveniences can be best described by those who try to minimize them or simply handle them—that is, by prospective mourners. That was why I chose “mourner” as a specific inquiry category in both case studies. The mourner became the epistemological category visualizing the relation to the needs of the dying patient, which in turn simultaneously reflects the declaration (or report), discussion, and negotiation of those needs. The mourner became that figure not only because she is often the one who speaks and negotiates with others, but also because she anticipates with the declaration of the dying loved one’s needs the ideas and imaginings connected to his or her own death. This categorization allowed me to incorporate the perspective of surroundings, of the society being confronted with the management of the dying and their daily lives. In the larger context of end-of-life controversies and the related acknowledgment of the emotional experience in both France and the Czech Republic, the mourner is then the observatory lens that connects the conceptual character of anamnesis of the emotional experience with the collective context of end-of-life discourses and that uncovers through the data the “awareness” (empathy, antipathy, reactions to one’s emotional experiences) that intimacy is identified by. Mourners revised what they believed about the end of life before the death of the loved one. All the respondents—regardless of their specific situation or their role as experts or relatives in the inquiry—tried to explain which circumstances had previously or would have promoted their ideas of “good dying.” The “good dying” was not reflected as a normative category that would be planned before, but as a result of what happened during the particular story told by the respondent. This actually became a certain kind of premise of how I understood the interview. To ask about end-of-life care and the particular experience should not reveal what the mourners decided or did. It concerned more the question of why they did what they did, or why they hadn’t done something else. What were the elements of security and anxieties that led them to their specific meaning-making in their situation? What hopes did they express for the participating Page 76 →institutions? Did they want to get support? And what kind of support were they hoping to get from the state? I regarded situations that the mourners had been through as impulses leading to inventing how to handle the insufficient, problematic, “horrible” institutionalized practices of end-of-life care. “Horrible” was a descriptor used by many respondents. “Horrible” was invoked not only to describe the emotional state of being afraid of losing someone interviewees cared about or of being disoriented by the circumstances that develop when someone is dying; the term also was applied to the communication resulting from the negotiation of

one’s imaginings and impossibilities that hinted at the realization of those imaginings. In order to draw emotionally closer to my respondents to secure the interview, I opted for the snowball method, but I was aware of the unremitting need to preserve the intimate sphere and the degree of familiarity that I could use in my inquiry while contacting my respondents. Although I began my gathering via hospices, this ultimately failed for reasons of confidentiality. One respondent contacted me via email based on a notice I posted on the Homecoming web forum. One point should be noted before we move on to the inquiry procedure itself. It was notable that the respondents asked for “intimacy” for their interview. They felt more secure when I had been referred by someone they knew, as they told me once we met. They felt uncomfortable when it was not a good time to ask for or to arrange an interview, because, for instance, the anniversary of their grandmother’s death was approaching, which made them unwilling to speak about that. And the opposite happened, too: some respondents wanted to speak immediately, and even requested a second meeting after the initial interview. In all these cases, I happened to be in a situation where a preinquiry took place before the interview that was either confirmed or modified during the interview itself. So it happened that the inquiry was enlarged by the preparation phase, during which I had to conceive of additional elements that might influence the respondent’s integrity. Through such reflections, I established a system of three principles: (1) The respondent was contacted via a person who knew him or her. After that, (2) it was up to the respondent to call me to schedule the interview at what she deemed the right moment. (3) The place of the interview was negotiated afterward. As became evident, there are only a few venues or spaces in which respondents were willing to discuss dying and intimacy. The respondents did not want to discuss their intimate sphere in a very public place or at work.4 Doing the interview at home was one option Page 77 →that approximately one-third of the respondents suggested. Other interviews were done in parks or in the small rooms or quiet corners of cafГ©s. The negotiation of the place for the interview was important for the meaning of the whole interview. Further, during the arrangement phase it was already necessary for me to interpret respondents’ reactions in order to be able to make the decision to (1) come to their homes, (2) go to a park, or (3) suggest a cafГ©. In the email conversation, either the respondent would suggest meeting in some specific place, or I would ask where she would like to meet, outlining these three options. The negotiation procedure before the interview became part of setting up the respective communication contract within which the inquiry would be pursued. The communication contract of the interviewees included the particular contexts of their specific emotional experiences. Mourners had to feel that I was aware of their sad situation and that I acknowledged it. Further, they were asking for permission to be open (“Is it bad if I use swear words while speaking about them [the health-care providers]? I really should” [interview CZ 17]), and wanted to ensure my respect for the unique character of their experience (“You know, I am not a typical case for you. My mother was really special” [interview CZ 16]; “I had plenty of problems at that time. Everything happened at once. That is probably not what you’re searching for because [my experience] is so specific” [interview CZ 15]). The nature of their experiences was the other pivot of the interpretation. The emotional experience, and the way I understand it through the interpretive background, also had an impact on the structure of the inquiry itself. Describing this process unmasks the nature of knowledge that these data offer. I was aware—this was the main paradigm. I was aware of the fact that any false step in the negotiation of time and place of the interview, as well as of the negotiation of what should happen, would mean interruption or cessation of the interview.5 I was aware of the fact that every step too far into the respondent’s life would disturb the atmosphere of the interview. As a consequence of this awareness, I began to consider the questions that should or should not be asked and eventually suggested that the use of recording device was not necessary if the respondent considered this harmful or threatening to his or her intimacy. It became apparent after the first interview that my own emotions were the crucial frame for the interview. Not only was I the “first responder” to weeping respondents, but also my own emotional movement would appear as a matter of fact. I conducted open narrative interviews that were conceived as telling a Page 78 →story. I did not want to disturb respondents or make them feel uncomfortable, so I decided to pose a first general question that would launch the

story (see below). The respondent knew that this was the only question she would receive (subsequent questions were just a matter of clarification). Second, I brought the perspective of the mourner explicitly to the interview. It was about them—about their being confronted with the dying of their loved ones, with their own anxieties and imaginings, and the interview should be a communication act in which they could openly speak about all those things. Third, I let respondents encompass all the aspects they saw as important for their story. I wanted them to depict and define the end of life of their loved ones by themselves. Therefore, in the mourner’s inquiry the question asked was: “How did you experience the end of life of your [loved one]? Tell me about your imaginings, anxieties, about what you liked, what you didn’t like. Just tell me how you specifically felt about all of that. It doesn’t matter where you begin.”6 I used explicitly the term “end of life” in order to give respondents the possibility of demarcating themselves what they meant by it, where they realized for the first time that the life was soon to be over, and why. All respondents began with a brief introduction of the main characteristic of the deceased person when she was healthy. Then they told me about the diagnosis, which was in most cases “sudden” (“One morning she just said she couldn’t stand up anymore” [interview CZ 16]; “And then she just told me she couldn’t finish cooking dinner” [interview CZ 22]). It was also important for the respondents to stress that the illness either completely transformed the state of mind of the dying person or, alternatively, confirmed his or her character. This state of mind consequently affected the atmosphere at home and triggered the mourner’s situation. This characteristic of the person helped outline the respondent’s relationship. The “dying” as such was thought of retrospectively. At the time respondents experienced their story, death was the only remaining alternative—it was something to be gotten past and put behind them. Over the course of each interview, respondents responded more frequently to my facial and gestural reactions to their comments than they glanced at the recording device. At the very beginning of each inquiry, I asked permission to record the interview and reassured the respondent that all interviews would be anonymous. No one refused to allow me to record the session. Respondents did not view the recording itself as a problem, except for some respondents when they uttered swear words, as I could tell Page 79 →from the fact that they then glanced at the recording device with a shamed expression on their face. Respondents in general showed more concern about engaging in the act of being interviewed. One such concern was that waitstaff in the cafГ© would hear us. Since in early interviews I had observed discomfort from respondents whose stories were interrupted by the return of the waiter, I subsequently tried to arrange with the waiter ahead of time that she would not disturb us after delivering our order to the table. Another concern about being interviewed became apparent when I began to take notes, which I finally either abandoned completely or kept to a minimum. Although no respondents complained about my note-taking, I wanted them to feel comfortable with the interview situation and not harbor doubts that I was not attentive enough toward them in the moment. For that reason, I preferred using the recording device, particularly because it allowed me to concentrate fully on the respondent. That an audio record was being made allowed me to look directly at respondents while they were speaking, fostering the impression of an intimate talk between the two of us, and I could react more quickly when difficult moments, such as longer interruptions and weeping, occurred. At such difficult moments, I adopted a sincere and empathetic tone, commiserating with distress or asking if the respondent would like to pause or stop the interview. Those situations were more or less spontaneous, and I also handled them spontaneously, without a script. I waited for some indication of whether to continue or to interrupt the interview, but in all cases the respondents elected to continue the interview. During such pauses, some of them placed another order with the waiter, lit a cigarette, or we just sat quietly for a moment before continuing. My interview approach hewed closely to Robert Weiß’s admonition: “The interviewer will respect the respondent’s integrity. This means that the interviewer will not question the respondent’s appraisals, choices, motives, right to observations, or personal worth” (WeiГџ 1994, 65). This rule is one of the premises to respect when a researcher goes to the field to make a qualitative inquiry. Nonetheless, my first interview with mourners demonstrated that being objective and “respectful” is not possible without also being “empathetic” and trying to understand the respondent. By becoming more interested in how respondents

felt in the interview situation, I developed a much better understanding of respondents and of their reliability.7 “Integrity,” as WeiГџ (and many others) understand it, was in fact disturbed by the respondents themselves. The respondents revealed their emotionalPage 80 → uncertainty about what to do, whether to take the family member home, or which health-care facility to choose for more advanced care. Moreover, those decisions were presented as matters of emotional perceptions and emotional choice: “In this hospice center, it was just so different, you know. They did not stick to some silly schedule of when [residents] should eat, drink, or urinate.В .В .В . I had the feeling that they listen to people carefully” (interview CZ 15; emphasis added). “I felt that my granddad is just unhappy there. He only ate what my grandma cooked for him and brought to the hospital. And the staff? Oh, my God! They were soВ .В .В . I don’t knowВ .В .В . it was just unbelievable and horrible” (interview CZ 24; emphasis added). By reviewing their emotional uncertainty, every respondent established a story that acknowledged his or her emotional experience during the interview. This perspective was important to explain what motivated respondents’ choices, and it enabled me to analyze whether the particular practice of end-of-life care was or was not sufficient and satisfying, and why was it so. The idea of “good dying” in its normative sense served as a convention from which the individual departs and to which she relates the story. “I couldn’t keepВ .В .В . [Mother] at home because I had to decide between her and my son, who was only two years old at the time” (interview CZ 15). In this story, “keeping Mother at home” was fundamental and readily recognizable as the normative idea of what should happen, although it directly conflicted with the respondent’s responsibilities to her own child. Similarly, a story about how to organize care of the mother-inlaw pointed to the normative imperative of keeping the loved one at home: “I have a flexible jobВ .В .В . [so] I switched to part-time and took care of her.В .В .В . She was not that demanding—she spent her time on her own with listening to radio, with reading—once a day we chatted a bit. This was no problem.В .В .В . I like to stay at home; I do not go to the cinema. Well, we have lost contact with some friends, because we had become that much inflexible, no holidays, nothing. But it’s OK: you know I like to stay at home, I do not go to the cinema” (interview CZ 22; emphasis added). Her repetition that she “likes to be at home” later reveals the insufficiency of the solution chosen (and, by the way, handled impeccably by this respondent). “But I have two daughters, you know.В .В .В . This is just complicated. Now, when my mother recently became ill, well, I cannot do the same thing as [I did] with my mother-in-law, you know. I just can’t.” Here, the normative state of home is disturbed by diverse elements: the choice between two generations (daughters versus mother), the fact of being exhausted by having Page 81 →cared for the mother-in-law for the previous three years, the lack of a personal social life, and so on. The need for the acknowledgment of the emotional experience lay in the midst of negotiating between what the respondent sees as “good dying” and what actions she actually takes. The questioning of the respondent’s integrity, the search for reasons, is revealed as the emotional awareness that helps respondents to open up to the interview and begin to explain their situation. The emotional nature repeatedly brought me to ask what the respondent meant by describing something as “horrible” versus “OK.” This meant interpreting what respondents meant in the context of the specific situation in which they sought justification for actions and feelings. The negotiation of the meaning within respective contexts modes of language and subject happened in the midst of my methodical thinking. This was true also regarding my initial contact with the respondent and in the course of the interview.8 I began to realize that we were negotiating the meaning together.

Negotiating Meaning The choices I had to make during the Czech inquiry are presented here extensively because they exemplify how I dealt with the evidence of emotional experience in both cases and how I designed the analysis respectively. In the French inquiry, during interviews with care staffers, claiming intimacy became the core and somewhat universal value for identifying the “goodness” of the respective institutionalized practice of the end-of-life choice that respective actors would argue for. The analytical aim is then not to extract some sort of essentialist notion of “goodness” but to reconstruct the various meanings of “goodness” that were reported during the inquiry and to show how these notions are related to a particular emotional experience and to the way this

experience is acknowledged or is not acknowledged. This means, at the same time, that the evidence of emotional experience is necessarily embedded in such interactions of the context, in which the person presents the particular claim, and of the position that the person has in this context. In a nutshell, intimacy is part of the discourse through which institutionalized practices are legitimized by the respondents. In its analytical understanding as a relation of the emotional experience to discourse, intimacy captures meanings through the constellation of the Page 82 →subject and the mode of language she uses to act, to enter a debate, or to react to a debate. Two analytical pathways are offered by this reasoning. Either one can take the institutionalized practice in question—a current policy, a claim by an interest group, or the agenda of an institution or a network—and look at the procedure through which meanings explain and coproduce this practice so that they legitimize it for those who carry it out in the policy debate. Or one can proceed the other way around and analyze meanings of the end of life by considering in which institutionalized practices these meanings are legitimized (and in which not). This second perspective is advantageous for us insofar as we deal in end-of-life controversies with a plurality of contexts and subjects that coexist and communicate, and we want to extract from this plurality what legitimizes the institutionalized practices in question. In their analytical fashion, institutionalized practices are in both case studies a constellation of “what” happens (subject), “where” it happens (context), and “how” it happens (the mode of language). Inspecting such a constellation involves searching for underlying agendas, hidden meanings that explain the consistency of particular political actions, measures, or policies. I present the analytic scheme, the communication contract,9 which captures these practices based on the combination of French discourse linguistics that studies how meanings are formed and changed through interaction and communication10 and the interpretive approaches to politics that show how meanings shape politics, thereby implying negotiation and power. The communication contract is defined through the scope of what the subject wants to achieve, and—what is crucial for its realization—it links the mode of language used during the communication not to some fixed context but to a context that emerges during the communication process. By that we can visualize how various meanings happen to be compatible with the institutionalized practices they are articulated in and how these practices might be amenable to different situations. This means that constellations of subjects, modes of language, and context are not given but become the matter of the analytical enterprise (figure 3a).11 As the figure 3a shows, the subject acts and reacts according to the context and the mode of language of the community within a specific “scenography” (Maingueneau 1998), while being able to change, at the same time, this context and language by linking the symbols, commonalities, or relationships of the audience strategically with his or her proper views. Here “scenography” strengthens the possibility of strategic planning. Patrick Page 83 →Charaudeau departs from this scenographic visualization of a discourse to depict the reason for the integrity of specific articulations and interpretations. In so doing, he introduces the term “communication contract” (Charaudeau 2000). Through this concept, he expands on the integrity acknowledged between the subject who speaks and the other who receives the outcome of the communication, and he sees this as a dispositive that can be modified, reframed, or changed during the communication. Figure 3a. In the communication contract, three elements coproduce meaning. The subject operates dually, because the speaking subject keeps his or her audience in mind and in so doing makes the triad of the context and the mode of language more plastic. The same counts for the context, where the analysis distinguishes between the context of production and the context of reception. At the same time, both the subject and the context are configured by other contexts that the subject has either not chosen or has refused. Under given conditions, reorganized power relationships and the plurality of values render the establishment of the contract more complex, and the triangular framing of the meaning (subject-context-mode of language) has to be stressed within this plasticity. This sort of plasticity is of special interest in depicting the emotional experience, as the latter is identified through explicit references and through the positioning of a text with respect to other texts. Also examined is the omission,

or tabooing, of certain topics in texts. As emotional experiences are identified, diverse contexts can be found in the respective epistemic community as well as diverse modes of language that respond to the cultural, geographical, or historical understanding of emotions both in the private Page 84 →and in the public spheres. Subjects that suffer in a specific context use specific modes of language. The position of the subject can be reframed in the communication, if his or her role in the communication pattern has changed. This can be the case, for instance, through the changed role of the patient as the one who must be informed, as well as through the role of the citizen who has to be consulted or negotiated with. Such changes reframe the context (setting) in which the requirements are made and the mode of language in which they are presented. The context (which means also new findings, reorganization within health care, etc.) reorganizes the subject and its mode of language. The mode of languages necessarily underlies a code of performance (diverse rhetorical jargons, conventional use of language, etc.) and modifies the subjects and contexts as well. The mode of language, for its part, stresses texts as assemblages of symbols, myths, narratives, story lines, arguments, scientific facts, wishes, and restrictions that are gathered around a specific topic. It classifies these assemblages according to the specific context in which they appear, and it also examines who speaks to whom and what their functions are within the specific contexts. I identify as particular modes of language linguistic specificities, language idioms, metaphors, rhetorical figures, cultural references, and citations, as well as particular syntactic structures and grids of argumentation. The particular configuration of the mode of language is formalized in different types of “text” that are the particular objects of analysis. The concept of a contract assumes the dual aspect of the subject as much as it implies conscious configuration of all three elements (subject, context, mode of language) based on the emotional experience and based on the aim that is to be achieved by the communication. If the contract is not accepted, the communication cannot be realized. Even if the communication fails—as in situations in which two parties finally do not reach an agreement or in which protesters shout at a politician—there was a communication that was realized: it has just been unsuccessful. The term “contract” stresses the vision of some form of interaction rules across the involved community to which the contract is directed. All forms of communication are considered in the corpus of data. I apply the broad notion of a text. Strategic papers, official speeches, published statistics and surveys, manifestations, visual images, media articles, discussion forums, publicities, symbolic heroes, and individual inquiries done by the researcher as well as policy papers, statements, debates, public performances, Page 85 →happenings, symbols, and discussions among concerned citizens as they are articulated in end-of-life policies are used as texts and objects of analysis. All these sorts of data help to identify systematically the nature of “subject,” “context,” and the “mode of language” of the respective discourse (fig. 3b). Communication contracts are identified by all possible sorts of data that can be gathered around this topic. Each piece of data is first investigated through the triangular optic of subjects, context, and mode of language, as previously stated. By uncovering these configurations of subjects, modes of language, and contexts, the analysis pays attention to the specificities of the actors (and their epistemic embedding), to the mode through which they present their practices (ideas, arguments, policies, protests), and to the circumstances in which these practices and actors occur. By explaining this configuration as “negotiation,” the analysis then depicts the configuration’s relation to other groups, other ways of communicating, and other contexts. The analysis depicts this relation by positioning the particular pieces of data in relation to each other. I reflected the way the topic of end of life has been debated in the character of the data I collected in both cases. First of all, I analyzed an extensive variety of textual data in order to depict all sorts of context put in play: policy documents of government institutions and nongovernmental organizations, expert debates, media cases and their reflection by experts and public, and websites of hospices and health-care units to identify such constellations. Moreover, I used self-acquired qualitative data from my contacts with experts, politicians, activists, professionals, and individuals affected by the policy problem. I was interested not only in the emotional experience I could find there but also in the way it was presented and in what ways the presentation format of this experience was related

to the medium, to the institutional context, to the communication stereotypes—to the context of each datum. In that sense, the analysis interrelated the evidence of emotional experience with the background information because the latter could be explained only within the particular background by which the data piece was acquired. The analysis being offered here focuses on the constellation of actors in relation to the issue they speak about, to the persons they speak with, and the emotional experience they report on and present within such a constellation. Intimacy frames the interpretation of this kind of data as a discursive reference; the issue is understood as intimate in Western societies, but it can be understood also as a concrete positioning of the respondent’sPage 86 → particular communication situation that she understands as intimate and gives reasons to consider as such. By explaining their understanding of intimacy, the respondent unmasks the institutionalized practice of “good dying” that she is part of, be it through the affirmation of opposition (i.e., what is not “good dying”) or some other mechanism. These justifications can be values, or they can be historical or cultural arguments that are inherently linked to the respondent’s emotional experience because she judges through them whether or not these values or arguments are the “good ones” or the “right ones.” Figure 3b. The particular mode of language is examined through the reactions to subject, context, and the actual process of fieldwork.

Note on Data Collection In the Czech case, the data collection reflected the confrontation with policy providers and policy receivers in the issue of end-of-life care, which has been revealed as representative of the negotiation that lies behind the institutionalized practice of “good dying” as it was framed by policy documents, strategy papers, parliamentary debates, and the media. The tension of this Page 87 →negotiation that emerges from the boundary between the individual and the collective was particularly interesting for me because it enabled me to go inside the process of acknowledgment of the emotional experience. Among policy providers, I queried policy advisors, institutional actors, and nongovernmental activists. Among policy receivers, I started with the twelve interviews described in the previous section and later continued the investigation at health-care centers and in interviews with care staff. Additionally, I made two observations: one in a special-care unit, and one during a coaching day for care staff organized by the nonprofit Homecoming. This inquiry built an important setting for the analysis of policy documents,12 political debates,13 expert debates,14 and media coverage on the topic15 and offered a more plastic image of the practice and its challenges. Similarly, the meaning of the “good dying” was crystallized through the development of the French political discussion that was launched in 2003 by the Vincent Humbert affair and continued with the media relaunch of the SГ©bire case in 2008. I have identified through the analysis of these events that occurred between 2003 and 2014 the pros and cons articulated in the French debate in the media and in the expert debates. I then investigated two networks operating in the reaction to this debate, euthanasia advocates (mainly around the Association pour le Droit de Mourir dans la DignitГ©) and euthanasia opponents (mainly around the AssemblГ©e Nationale and the Association des Soins Palliatifs in France), conducting interviews between 2005 and 2013 with hospice directors, activists, and policy advisors who were following the debates. I analyzed the text of the Leonetti Law16 and contextualized it by the debate around the vote on the law promoted by the special ad hoc parliamentary mission tasked with creating an “appropriate law on the end of life in France.”17 I also examined the manifold reactions to the law from 2005 to early 2014 as these were revealed in strategy documents18 and expert debates19 and were referred to in my interviews. I completed the analysis by media coverage of the entire French press archives between 2003 and 201620 in order to identify the moments of the controversy that influenced its dynamic and to interpret the 2016 Claeys-Leonetti Law,21 which aspired to put an end to the French end-of-life controversy.

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Chapter 4 The French Solution to the End of Life: Debating Intimacy, 2003–2016 Can we tolerate, without being ashamed, the suffering of those whom medicine has artificially kept alive, whose end of life approaches and who kept asking their doctor to help them end it? Should we “unplug” them and close the door? Can we let them die of hunger or thirst in front of their parents, like Terri Schiavo in the United States? Should we let them die of asphyxiation or choking? This is exactly what the Leonetti Law, passed 22 April 2005, tells us, a law that protects doctors for “letting” their patients “die.” (Peut-on tolГ©rer, sans avoir honte, la souffrance de ceux que la mГ©decine a maintenus artificiellement ou dont la fin de vie approche et qui demandent Г leur mГ©decin de les aider Г en finir? Doit-on les “dГ©brancher” et refermer la porte? Peut-on les laisser mourir de faim ou de soif sous le regard de leurs parents, comme Terri Schiavo aux Etats-Unis ? Faut-il les laisser s’étouffer ou mourir asphyxiГ©s? C’est pourtant ce que prГ©voit la loi Leonetti, votГ©e le 22 avril 2005, qui protГЁge les mГ©decins “laissant mourir” leurs patients.) —Le Figaro, 15 October 2007 The chapter epigraph is related to the critique of the Leonetti Law, which represents the midpoint of the French controversy, and is revelatory about the role of intimacy during the French debate between 2003 and 2016. Its rhetorical questions raise interest and increase the public’s emotional involvement. This is even more the case if we use terms such as “unplug” a patient and “die of hunger or thirst” because these terms appeal to our mutual common sense that compassion for our dying ones is a core value of the modern civilized world. The whole French end-of-life controversy is full of such means of communication, no matter whether those who pronounce Page 90 →them are supporting or criticizing the Leonetti Law and whether they are for or against allowing some form of self-chosen death in the country. These means of communication reveal the role of intimacy as an element for setting a policy on the end of life as well as an element for a strategy trying to calm the controversy that stemmed from the respective policy. I offer here the story of how the French end-of-life controversy developed from the media case of Vincent Humbert in 2003, how it culminated in the Leonetti Law, and what reactions this law has provoked since its passage until the early 2016 revisit of the law through the Clayes-Leonetti Law, which extends patients’ rights and opens the option for terminal palliative sedation. The analysis of the actions pursued by French public institutions as well as by private actors reveals the role of intimacy in the controversy as a device of mobilizing, protesting as much as a device of taming and soothing the emotional experience related to the end of life. However, I do not intend to tell a story about how the Leonetti Law, passed in 2005, could have been better formulated, nor do I intend to assess whether its 2016 actualization adequately responded to the critique that has marked the debate for a decade or even to speculate whether this implementation will lead, at some point in the future, France toward a law on assisted suicide or some other type of legislation on self-chosen death. The French end-of-life controversy is here a site for observing a governing regime that places intimacy at the heart of the boundary between individual and institutions that drives the political negotiation over an end-of-life policy and that reveals the uneasiness of current liberal democratic policy regimes. The analysis points out five principal milestones: the Vincent Humbert affair in 2003, which motivated the Leonetti Law adopted in 2005; the Process PГ©rigueux in 2007, which uncovered the cleavage inside the French expert community with respect to the law; the 2008 Chantal SГ©bire case, which sealed this cleavage by giving the right-to-die movement a new impulse and a stronger international dimension to the end-of-life debate; the

Sicard Report (Rapport Sicard 2012) released in 2012, which openly admits that the debate remains ambiguous; and, finally, the case of Vincent Lambert in 2014, which revived the legal initiative to revisit the Leonetti Law between 2015 and 2016 and involved, among other bodies, the European Court of Human Rights in Strasbourg as one of the actors and showing that the ambiguity of end-of-life issues, stated repeatedly by all actors, has a considerable impact on the way institutions deploy their power. The analysis of the French end-of-life controversy along these five pivotal Page 91 →moments reveals the paradoxical relation of the individual with political institutions challenged by intimacy that is both necessary and impossible. To rely on the so-called French solution—as it is labeled during the observed period by manifold actors—means to rely on the emotional experience that has a supranational and supraideological validity and to combine this experience with the principles of liberal democratic order. Simultaneously, the persistent conflicting attitude among the actors who are against the end-of-life practices established by the Leonetti Law shows that neither the individual nor the state can handle the relation between them. The French end-of-life controversy divides on the competencies of liberal democratic institutions and their capacity to accommodate emotional experience with the end of life. In the following sections in this chapter, I look at how the main actors in France—politicians, experts, church authorities, the media, and nonprofits and other organizations—dealt with the French end-of-life controversy and how they argued for autonomy and dignity, thereby revealing intimacy as the main area of the controversy. Through this conflict, we can see how intimacy—be it manifested through the wish for a self-chosen death or through the wish to keep the tasks and competencies in the practice of the Leonetti Law—becomes key in the individual’s relation to the state. I begin with the sociopolitical and institutional backgrounds that have shaped the way actors have entered the endof-life debate since 2003. I have collected this background through period sources, also evaluating it through my fieldwork, in which experts and policy actors I interviewed marked events and historical moments they considered important and relevant for agenda setting in 2003. The historical background becomes itself part of the end-of-life discourses as interviewees identify key moments in the history to undergird their arguments, to explain their adherence or their opposition. These references display the reasons why they do or do not acknowledge particular emotional experience with the end of life or why they prefer another one. At the same time, these references might change as the result of new events, and these changes are explained especially when I analyze post-2008 developments. In that way, the background sets up the actual analysis, which considers, as a point of departure, the parliamentary inquiry mission in 2003 reacting to the Vincent Humbert affair, which precipitated the legal situation and developed the related debate up to the present. In the first part of the analysis, the negotiation concerning the Leonetti Law and its reception are analyzed Page 92 →via media coverage in the French press—notably Le Monde, Figaro, and the Nouvel Observateur—and international media reporting on the cases between November 2004 and September 2008. The concerns of actors are complemented by the transcripts of the parliamentary debate on the law and expert interviews I conducted between April 2005 and July 2009, which comprehensively addressed the context of the new events of the debate (Process PГ©rigueux and the SГ©bire case). The second part of the analysis considers developments after the Chantal SГ©bire case in 2008, especially the debates precipitated by the Sicard Report in 2012 until the early 2016 revision of the law. By 2012, French institutions had changed direction by stating the need to reorient the debate toward more systematic conversations with the French public. The analysis considers all relevant policy documents, strategy papers of involved institutions and professional organizations, public polls, media coverage between 2008 and 2016, as well as press releases from both state and expert committees in order to examine the ways in which the public has been included and whether this has changed the end-of-life controversy. The examination is completed by expert interviews from the end-of-life care sector, which has become active after 2012 in reaction to the Sicard Report. This two-part interpretive examination provides a detailed picture of how, at the beginning, the argumentation groups for or against self-chosen death copied the separation between established institutional actors and protest

groups from the civic sector. This is quite a usual observation when societal innovations are negotiated within policy regimes of liberal democracy. Whereas French opponents of active euthanasia can be seen mainly within the traditional institutional setting of the French political system—the AssemblГ©e Nationale, the French Medical Association, the National Consultative Ethical Committee, and the French Association of Palliative Care, as well as other professional networks—euthanasia advocates are concentrated in privately organized networks, policy advocacy groups (e.g., ADMD, the Association for the Right to Die with Dignity),1 the media, and transnational actors. The analysis shows how this separation is challenged in the course of events. The question to be raised is whether the increasing inclination toward euthanasia in the French society (public polls) is the result of the conflict over how the emotional experience of the public could be, or not, acknowledged by the French political establishment, especially when citizens Page 93 →see that their wish to legalize euthanasia is accepted abroad. The 2008 SГ©bire case shows nicely how this original separation of actors becomes blurred, and their reorientation culminates in 2013 in the press release of the National Consultative Committee on Ethics (ComitГ© Consultatif National d’Éthique), which—as a reaction to the Sicard Report—supported the eventual possibility of assisted suicide. The subsequent events that led to the new law can be then seen as a reaction to citizens’ requirement for acknowledging the emotional experience with the end of life. However, the controversy does not end there but instead opens a novel conflict from the side of those who see the new law as going too far. Any suggestions to revisit the policy become caught up again in the discourse in which one accuses the other side of lacking sensitivity to emotional experience. Emotional experience is thus both the key to the controversy and the impediment to solving it.

Shaking LibertГ©, Г‰galitГ©, and FraternitГ©: The Background of the French End-ofLife Debate LibertГ©, Г©galitГ©, and fraternitГ©, historically the three main values of the modern French political institutions, represent the central stage on which the French end-of-life controversy—as does any other controversy of the country—takes place. This stage has been revealed as tricky, as none of these values provides an automatic explanatory ground to find a consensus in the matter. Together, the French political tradition of liberal democracy, the notion of the French social state, and the institutional commonplaces of the country around health care play the role of a reference2 in the development of the controversy and show how debating end-of-life policies is in fact related to the practice of the political institution in more general terms. One of the prominent national inquiries on French values from the time of the debate revealed that whereas the French were clamoring for more power for regional authorities, communes, and the parliament (Cevipof 2006), they simultaneously saw themselves as disadvantaged and marginalized in relation to these “big and historical” institutions of France, which they are keen to see change. The exclamation of one of my expert interviewees—“We are petrified by our history and our culture”3 (interview FR 5)—expresses also the stereotypical view of insiders that French political institutions are unquestionable and more or less unchangeable. Page 94 → Thinking about death means also thinking about liberty, said Seneca. It is in the name of this liberty, reinforced today in this forum, that this law [that does not allow euthanasia or self-chosen death] merits our support. (Penser la mort, c’est aussi penser la libertГ©, a dit SГ©nГЁque: c’est au nom de cette libertГ©, aujourd’hui renforcГ©e dans cette enceinte, que cette proposition de loi mГ©rite notre soutien.)4 Such were the words of parliamentarian RenГ© Roquet, who in 2004 warned against any movement that might lead to euthanasia or any other form of self-chosen death in France. The civic value of libertГ© is engaged in his argumentation in a narrow relation with the other two values, Г©galitГ© and fraternitГ©, which appeared also as highly problematic when looking at end-of-life issues when the debate started in France in 2003.

Г‰galitГ© impacts actually the crisis of the social state in France that has been discussed during the last two decades in almost any of the country’s policies. Related to the health-care sector more specifically, the main argument has been that the principle of the social state fades in the light of recent health-care reforms that demand of patients greater financial contributions. The notion of the social state had already been modified in the 1970s as a result of the diversification of France’s insurance systems, which marked a considerable change from what until then had been conceived a cornerstone of European solidarity. As part of this diversification, “basic care” is distinguished from “specific care”; the latter is covered mainly by private insurance (OECD 2005). In particular, innovative medical techniques and treatments not classified as “standard” are not covered by the basic insurance. Two classic examples of care falling outside of the “basic care” formula are the abortion pill (also known as a medical abortion, or more colloquially as RU-486) and palliative care in hospices (see Memmi 2004 and Ollivier 2007). Palliative care is covered on a basis of a unique tariff that, however, does not cover the total expenses.5 So, as it seems, relying on equality does not provide any remedy to solve the end-of-life controversy but makes it more problematic because it opens a discussion of who can afford good dying and who not. Fraternité—for our purposes we interpret this as solidarity, because this is how the value is anchored in the tradition of the social state and the related organization of health care in France. It joins the more general narrative of modern Western civilization that builds upon a compassion for the dying. Within the new developments of the French conception of the social state Page 95 →(Rosanvallon 1994, 1995, 2003; Todd 1999), solidarity also tends to be reorganized, and is often debated during election campaigns. As the debate on the end of life shows very well, it becomes a perfect example of a political cleavage between the institution and the public.6 Now, this setting of the French institutions becomes shaky during the end-of-life debate from 2003 onward, as these institutions are unsuccessful in calming the end-of-life controversy. The shakiness results because—although they adopt the law unanimously in 2005—from 2003 to 2005 they are under constant attack from nonprofits and other civic groups, from the media, and from references to international stories and public polls. This challenge directed at French institutions is not solely about the end of life; we can observe a similar tricky role of French values in other recent political developments, such as the controversy about marriage equality in the spring of 2013, the unresolved social movements in 2006 and 2007 centering on work policies for young people, and the university reform strikes between 2007 and 2009.7 Coming closer to the actual context of the end-of-life care policy at the outset of the debate, the OECD survey in 2000 identified the French health-care system as the best in the world, which has also been reflected in many reports and strategy papers during the end-of-life debate (Bardy 2007, 9). Such a positive view of the French health care is also supported by the high quality of life in France regularly revealed by polling. At eighty-four years for women and seventy-seven years for men, the French life expectancy is quite high, and the nation’s special health-care services are regularly classified as among the best in the world (OECD 2005).8 Despite France’s high care standards, the OECD nevertheless made two recommendations that bring us closer to the ongoing discussion about the end of life: involve the patient more in decision-making; and enhance citizens’ knowledge about health-care possibilities that would motivate the citizen to choose them, even if such care is not covered by the standard social security. In this respect, many social-science scholars have already examined structural challenges in France’s public health system (Fassin 2005; Memmi 2003; Ollivier 2009) and have classified the problems of the inclusion and categorization of the elder population as among its greatest shortcomings. Moreover, the 2014 National Demographic Institute (Institut National d’Etudes DГ©mographiques, INED) report shows that inpatient end-of-life care requires more resources than are currently provided even in state-of-the-art facilities (INED 2014). This trend is, again, not specific to France. Postindustrial societies of the Page 96 →Western world are generally challenged to regulate end-of-life issues against the background of the new demography, namely the increasing problems and illnesses of the elderly, and the high economic standards of an economically active population. The demand for public regulation becomes intensified through the decrease in the number of multigenerational homes that once functioned as the care setting for the elderly and that now seem to be irreplaceable. This view of a difficult challenge to embrace both the collective developments and the individual wishes is in fact one of the

main argumentative backgrounds that nurture the French debate on end-of-life issues and link it to discourses about the organization of the society and, in particular, to the way that public authorities and experts communicate these organizational principles, tasks, and challenges related to them to the public. The background of the controversy shows that the “French solution” that is to be debated from 2003 onward is sustained by another narrative, that French society is “at the edge”: at the edge between the demographic challenge and the perseverance of high quality of living; at the edge between individual wishes and collective responsibilities; and, with that, at the edge between paternalistic approaches to regulate end-of-life issues and emancipatory forces demanding revisions. The role of patient is redefined through her new role as a partner in the negotiation of all these edges that altogether become embedded in self-governing attitudes of the individual. Framing the Actors: The Predecessors and Prejudices of the End-of-Life Controversy The debate on the end of life was not the first one in France—medical ethics and medical practice had already been points of concern within the moral sphere and politics. Before the Loi Veil abortion law in 1975 came the legalization of contraception in 1967, followed in 1968 by the authorization of heart transplantation through redefinition of death as “cerebral death.” In 1976, it also became possible to register one’s sex change, and homosexual partnerships have been legally recognized since 1982 (finally in 2013 being granted the status of marriage). These earlier milestones reappear in the debate on the end of life because they recall that rearticulating the role of the individual in liberal democratic regimes was a central aim during the post-1968 social movements responsible for important changes in French social life. The example that best illuminates the role of freedom in the French political discourse around health Page 97 →care was the debate about the so-called Loi Veil, which legalized abortions in France in 1975.9 Loi Veil represents one of the central points of reference to negative attitudes toward any forms of self-chosen death. Opponents of euthanasia saw Loi Veil as representing a political moment in which the “institution has succumbed the emotions of the public” (interview FR 1). In hindsight, however, it is clear that this law was too liberal for a society that was not prepared for it: “Perhaps the society went really too far in this sentiment that we are masters of our body, whereas this is simply not true because, as I can see in the psychological practice, the body owns us and not the other way around” (interview FR 7). According to these imaginings and impressions, the law on abortion was then used as an example of a slippery slope when debate began after 2003 (Leonetti 2004).10 In the parliamentary debate on the end-of-life law, the minister of health care, Philippe Douste-Blazy, asked quite pertinently, “Would we be prepared [to accept euthanasia] at any point in the future?” A law regulating the end of life make take into consideration its fatally definitive, irreversible character: We have to try everything that does not injure the other, and only a law can regulate limits of our actions. (ГЂ pouvoir faire tout ce qui ne nuit pas Г autrui et dont les bornes peuvent ГЄtre dГ©terminГ©s que par la loi) (Champrenault 2004, 34; emphasis added)11 At the same time, actors who argue in favor of the Loi Veil use this link as proof of the positive results of standardization: “It is a good example that shows that a law does not generate aberration but provides a frame” (MO, 26 January 2005). The president of the Association pour le Droit de Mourir dans la DignitГ©, Jean-Luc Romero, spoke about the “law of liberty” (GE, 26 March 2007). The frame of such a law should be the guarantee of regularity and control and should justify the “exception of euthanasia” (MO, 12 April 2005). This exception becomes even more important in the light of the references from abroad, mainly the Belgian and the Swiss experiences that complement the argumentative background of the French end-of-life controversy. The world experience with the end of life serves as the main source of facts and arguments for the French slippery-

slope story line. In particular, debates on euthanasia in the Netherlands, Belgium, and Switzerland are seen as exemplifying how the issue can run out of steam. They are portrayed Page 98 →as a “moral catastrophe” referring to fears that the practice of euthanasia will cause a slippery slope, and that in fact all those wishes for self-chosen death are either “dangerous” or “irresponsible.” These three countries are nonetheless used by the opposing parties in France as examples that achieving a law on self-chosen death is possible, and further, that if the French are too cowardly to enact one, the French resident can always go to Switzerland. “To be free to go there” becomes then a further line of conflict in the controversy, as we see especially in the case of Chantal SГ©bire. This line is used not only by advocates for legalizing self-chosen death. It is also mentioned by professionals against such death as way of dealing with the fact that there are people who want to choose the moment of their death: “Well, they can go to Switzerland, if they want to” (interview FR 18). This discourse on other countries having the possibility of euthanasia is embedded in the French bioethical discourse that forms the very important background to the debate by emphasizing that France should have a “French solution.” Once the debate began, many health experts and ethicists warned against “moral catastrophe” in relation to death and the end of life, articulating on that basis the need for a rational relation to death. The introductory phrase “Our society is invaded by denial and by fear,” by the author of the end-oflife law, Jean Leonetti, in the preface to the law’s text is revelatory for this bioethical background. It can be summarized by the influential thinking of the French historian Philippe Aries about “savage death” that results from the modern separation of the relation between the living and the dead (Aries 1981). Aries will be quoted at several occasions in the parliamentary report and in the expert interviews. Other ethical studies in France build on his separation and compare various French public polls to those in other populations, notably Mexican culture, which has been described as dealing with death in a more “natural way” (de Hennezel 2005). The prominent journalist and founder of a unique health-specific radio channel in France, GГ©rard Bardy, speaks, in reference to the French bioethical discourse, about the advantages of dealing with death in Mexican or African populations (Bardy 2007, 26) and searches for the reasons of the fear of death within the tradition of what he calls the European consumer society: “It is really our society, our public powers and our economy that we can accuse of that,” he concludes (Bardy 2007, 33).12 The crucial moment in this reference is that the rational discourse on end of life is represented by the “acceptance” of death demonstrated in Mexican culture by the annual death observance on 2 November, the DГ-a de los Muertos (Day of the Dead).13 In Page 99 →the French bioethical discourse, the idea of acceptance of death comes through as the main story line and is articulated through the lack of respect for elders, which is stated in many different ways and at many different stages throughout the debate. Not all bioethical experts stay nevertheless within a straightforward paternalism articulated through this acceptance of death as conceived by Aries. Many experts in the country were aware of the need to enhance patient rights regarding medical treatments (such as Delbecque 1994), but they believed that such laws already existed and that these sufficiently protected the patient at the end of life. Examples brought to bear in the end-of-life debate are mainly the 1999 law, which added the term “palliative care” to legal health-care terminology by guaranteeing access to this aspect of care to every person whose state of health requires it (Loi 1999), and the 2002 Kouchner Law,14 which initiated the debate about the patient’s right to consent to treatment and, more importantly in this context, to contest continuation of the treatment. This law (notably articles L-111-4 and L111-6), differentiated between refus (refusal), limitation (limitation), and arrГЄt (cessation) of treatment. The medical decision-making applicable to a patient’s terminal stage of an illness and to the end of life had also been previously regulated through the 1995 Code of Medical Deontology. More specifically, article 38 declares, for the first time in the French medical law, the necessity of patient consent for treatment. These three legal framings of terminally ill patients are the basis for the parliamentary mission and for the general question about how to reshape the policy on the end of life in 2003. On the other side of the discussion on end-of-life choices, the background is—besides the already mentioned example of the argument of going to Switzerland—expressed by depicting humiliated patients whom the French state is unable to take care of. This picture of a state that does not “take care”—as we have seen also in the quotation at the beginning of the chapter from the daily Le Figaro about patients being left to die of hunger

and thirst—is supported by general reports on the desperate situation in health-care services in relation to the patient. Journalists report brutal ways in which cancer diagnoses were delivered to patients and patients who are excluded from treatments because such treatments are not covered by their insurance (Bardy 2007, 330). These reports are embedded in the larger context of “depersonalization of care” in France (La Marne 2005), be it the mere fact that new concepts of care cultivate new social relationships the patient is embedded in. One particularPage 100 → context of the depersonalization is the financial argument. The medical sociologist Dominique Memmi comments on the financial involvement of patients and points to its rising self-governing character.15 This character is also anchored in the reform of public health presented by the conservative government of FranГ§ois Fillon in 2008. The reform established “medical franchises,” within which patients pay a percentage contribution for every medical treatment and for every prescription. Changed lifestyle choices, higher expectations for modern medicine, and, finally, changed demographic relations are said to have driven these changes in health care. The financial contributions of the patient are thus justified through the paradigm of these enhanced expectations and are consequently to be regarded as positive developments. This reform was, as were many other reforms of Fillon’s government, part of the discourse of President Nicolas Sarkozy, who argued for a larger redefinition of the social in France. Since France faces the aging of its population, Sarkozy argued, we need to argue for a novel notion of solidarity. First, aging is to be redefined as a positive thing: “The aging of the French population is, in fact, the result of the amelioration of their health state. However, health is a fragile category, a precarious one, which is why everyone when he thinks about his own health is troubled. My responsibility, and the responsibility of the government, is to take the expectations of the French into account and do everything in order to try to satisfy them” (emphasis added).16 The patient who has changed her lifestyle, who lives in a different demographic structure, must accept the new notion of solidarity. The individual pays her portion because it is both in her interest and in the interest of reducing what other people, who suffer more, have to pay. The principle of the social state, which traditionally has been present at the core of the French public health-care sector, is redefined by this increased responsibility of the individual. It follows that those who are against such changes are to be “morally” accused. The other, nonfinancial, part of the depersonalization of care is the strengthened focus at the communication between patient and physician. Experts state the need for improvement both in communication practices in the health-care sector and in staff training. The work of philosopher and bioethical expert Emmanuel Hirsch and his colleagues is particularly important on these points. One of the most prominent ethical experts in France on palliative care, Hirsch has dedicated a large part of his research to the difficulties Page 101 →of communication and to the emotional bearing of being the one who stands before a dying patient. Marie de Hennezel—who has taken part in the parliamentary mission, has extensive familiarity in end-of-life matters, and is considered a leader in end-of-life ethics—views the challenges of care being simultaneously its own pitfalls because personal dignity and familiarity are being evacuated from everyday life (de Hennezel 1996) or are simply being reframed. These requirements are visualized also in the reorganization of the evaluation of emotional experience that appear in the context of the daily routine of care for terminally ill. Dominique Memmi speaks about “governing through speech” and recognizes the pivotal role of the communication skills of the patient who knows how to argue, how to ask, and what to ask. Such an observation fits, in fact, into the general developments observed by medical sociology that reorient the role of the patient (as reported in chapters 1 and 2) and see this role as complementary to the more general development of political communication. Indeed, some French analyses of communication in health care recast the figure of the patient in conflict with the doctor as analogous to the figure of citizen in conflict with the political establishment (e.g., De Closets 2008 and Padioleau 1981). This reveals the evoked analogy between patient and citizen where the patient does not simply adopt or receive the care measure; she frames them by her specific attitudes, by non-health-related practices that have already become inherent in his or her life. The practice of care, encompassing all manner of medical interventions that the patient or the family must give consent to, is of particular importance for the daily routine of care because the latter

frames the way medical interventions are presented in political debates and are carried out in the controversy. Both the ethical appeals of the state authorities (supported by bioethical community) and emancipatory movements calling for legalizing some form of self-chosen death must be seen within the larger spectrum of the intersection between the political dynamics and the routines of end-of-life care. That is how the evoked edge becomes contextualized: every time someone appeals to the new knowledge about the end of life, she includes the difficulties of defining the borderline between death and life. The same happens in the arguments bringing forward the alarming changes in demography and challenges this creates for the state’s charge to ensure public health (Fassin 2005). If the premise of the state has been to cultivate the social through diversePage 102 → care policies and to give subjects a specific culture that those policies incorporate (Fassin 2005), then the debate around the end of life visualizes exactly this. Orienting Actors in the Debate over Intimacy By 2003 the supporters of the end-of-life law were dispersed around the French political establishment. These actors are embedded in institutions political (e.g., parliamentary and presidential offices) and social (e.g., French Medical Association, National Bioethical Committee, and the Association of Palliative Care [ASP]). Moreover, these actors are supported by the authorities of the four major religious groups in France: Roman Catholicism, Islam, Judaism, and Protestantism, as the report of the parliamentary mission documents the responses of the respective ecclesiastic authorities who were interviewed by French parliamentarians. All these actors are part of “established” institutions in the French society and are generally seen as relevant to the society or “conventional.” Subsequently, the values these actors incorporate remain within the traditional zone of the Western secular heritage of Christianity. Properly speaking, the attachment of the actors to the established institutions uncovers the thematic link to a “conventional” view on the end of life and renders it possible to apply language’s moral mode. To this adhere then several private associations that label themselves as conservative or conventional, among them the Alliance for the Rights of Life (Alliance Pour les Droits de la Vie, APDV) and the online information platforms GEN and Zenith. The group on the other side of the argumentation was formed by those who were—at least by 2003—outside this establishment context. The exception to this separation is the former French minister of health Bernard Kouchner. Kouchner achieved fame in French society as a cofounder of MГ©decins sans FrontiГЁres (Doctors without Borders), the globally known organization that brings medical workers and care to developing countries. He influenced the French debate by not directly refuting arguments in favor of euthanasia, as apparent on several occasions in the media from 2003 onward. He supported the mother of Vincent Humbert, who gave to her son a substance to end his suffering, but he did not agree with the position of ADMD, the nonprofit advocacy group that led the effort to legalize euthanasia. His opinion has been—as the members of the French parliamentary mission put it themselves—“tolerated” but not really taken into account. Page 103 →The most important vehicles of the debate are nevertheless the three patients Vincent Humbert, Chantal SГ©bire, and Vincent Lambert. It is through their story that the public conceives of the end of life. In a similar vein, Dr. FrГ©dГ©ric Chaussoy—Vincent Humbert’s lead doctor—as well as the nurse Chantal Chanel and the medical doctor Laurence Tramois from the Process PГ©rigueux serve as concrete referential points in the debate that mainly show the ambivalence and the need for an individualized handling of end-of-life issues. The promoters of self-chosen death, or, properly speaking, the ones who fight actively for a law on assisted suicide or euthanasia in France, are represented through the Association for the Right to Die with Dignity (ADMD). With its director, Jean-Luc Romero, the association has been promoting the idea of self-chosen death from the very start of the debate, and has been inspired by the legal situation in Switzerland and Belgium. ADMD supported Vincent Humbert in his request and was also in contact with Chantal SГ©bire. They were also sponsored and supported by important figures, among them Mireille Jospin, the mother of the former socialist

prime minister Lionel Jospin. The association was nevertheless seen by some as too radical, as, for example, by Bernard Kouchner. Apart from ADMD, other actors, without themselves articulating a specific wish for euthanasia or assisted suicide, criticized the AssemblГ©e Nationale for passing the Leonetti Law. These actors became more visible during the Process PГ©rigueux and consolidated around the “Manifesto of 2000” (see later in this chapter). Other groups of experts entering the public debate consolidated in the course of event include the contributors to web platforms, such as La Triste RГ©alitГ© sur La Fin de Vie (www.fin-de-vie.org). This website became active after the Leonetti Law was revised and has gathered and posted information on media cases, including of course that of Vincent Lambert. The French media—Le Monde, Le Figaro, and Nouvel Observateur, as well as the main TV stations (TV5, TF1)—play a particular role in the French debate as they become vocal critics of the Leonetti Law and the platform to externalize citizen concerns about the end of life, including the prominent cases of Humbert, SГ©bire, and Lambert. Their engagement in this cause goes well beyond any logic of a sensation; several points are raised and debated in the media from 2003 onward, settling the debate not so much along ideological lines but along the particular presentation of the emotional experience with death and dying. Of interest in the media discourse is Vincent Humbert’s Page 104 →“right” to die that reappears in the course of the controversy. Vincent not only “wished” to die, but also wanted his decision to be acknowledged by the institutional authority. Chantal SГ©bire’s wish follows the same logic and therefore points, not to a larger social conflict in which an individual is pitted against a law, but a debate over how good dying can be conceived of. The social nature of the conflict is also visible in the most recent case of Vincent Lambert, where division within the family reflects the division in society. Such a division of public opinion over the stories of Vincent Humbert, Chantal SГ©bire, and Vincent Lambert in opposition to the view of experts or politicians is scarcely new in end-of-life controversies and would not draw our attention here if the French debate did not involve the imperative of making the “right decision.” The explicit aim of all the actors has been to make the “right” decision—that is, one that others would accept as justified and that would calm down the controversy or even end it. This is the reason that rearticulating French cultural values concerning emotional experience—which could provide something of a new moral ground—presents important nodal points in the arguments both for and against euthanasia. Simultaneously, the arguments that relate to the emotional experience with a particular situation of the end of life deploy the same justification pattern. They appeal to the compassion, understanding, and empathy of other French. As I show in more detail in the following section, some emotional arguments and the appeal to emotions (mainly for euthanasia) are nonetheless rejected by the political establishment and by both palliative care professionals and ethical committees. Emotionalized patients and their relatives wishing to die are seen as “dangerous” (GEN, 7 March 2007),17 or “not really meaning” what they say they want, namely, to die (interview FR 2).18 But the public’s relation to this emotional experience—and crystalized as against the Leonetti Law—is not so straightforward. Whereas citizens demand emotional concern from the state on these matters, at the same time they declare that the state has not the slightest idea of what they are going through because the emotional experience is such a personal or intimate matter that any law or indeed any kind of collective regulation could not possibly integrate it. In the same manner, the political establishment, while demonstrating its will to respond to citizens’ concerns, resorts to referring to those who want active euthanasia as “healthy ignorants.” The analysis of the French end-of-life controversy I am offering here therefore attempts to get at the emotional experience with the end of life of Page 105 →French patients and their mourners, and the way it has been handled by palliative care units and other medical institutions, as well as by politicians, courts, and the media. In the course of the controversy, “intimacy”—as the acknowledgment of the emotional experience—was, either unintentionally or not, invoked by both camps and was stronger than any reference to national values or ideological presuppositions. The implication of intimacy goes beyond whether the proposed policy expresses empathy for the other side, or whether it makes space for externalization and consideration of emotional

arguments. It shows the fundamental conflict in the relation between the individual and the surrounding collective that revolves around the acknowledgment of emotional experience with the end of life by particular groups.

Sustaining the Liberal Democratic Regime through the End of Life At the time of the preparation of the Leonetti Law from 2003 to 2005, the two parallel discourse communities for and against self-chosen death represented a fundamental separation in the controversy between those who know and those who don’t know. On one side are the experts from the field, namely physicians, nurses, and the end-of-life care staff, who become partners for the formulation of the “end-of-life law”; on the other side are the advocacy groups (mainly ADMD) and the media, which sympathize almost unconditionally with the actors in the Vincent Humbert affair (mother Marie Humbert and Vincent’s last physician, Frederic Chaussoy). This separation was very powerful in 2003 because it legitimized the attempt to keep end-of-life issues within the current societal and legal limits as much as it justified the accompanying paternalistic discourse that engaged individuals responsibly and humbly. The analysis introduces here the main struggles in visualizing how French political institutions try to maintain the status quo and how they search for legitimation of their position in the paternalistic discourse of the enlightened institution. Both communities relate their position to the values of freedom and to the sacredness of life, but integrate those values differently in their argumentations. Whereas the established institutional actors emphasize the collective notion of death, including collective humility before it, the civic sphere focuses less on this collective context of mourning and grieving than on the Page 106 →particular emotional experiences related to an individual’s personal feelings or opinions. The argumentation is therefore more “collective oriented” in the case of institutions and more “individual oriented” in the civic sphere. This precise disparity between collectiveoriented and individual-oriented camps anchored the subjects in specific modes of languages and contexts. It, first, created a “contract of communication” that finally and paradoxically made the argument for legalizing euthanasia more favorably viewed in the public polls. The prevalence of paternalist discourse in the public sphere as an essential component of the debate around the Leonetti Law could have been one of the main reasons for its nonacceptance by the French public. Sustaining the Paternalistic Discourse of the Enlightened Institution The French parliamentary mission in its introduction to the end-of-life law proposal in autumn 2004 asserted to the AssemblГ©e Nationale that French society “is plagued by denial and fear.” Back in 2003, the mission had been tasked with exploring everyday medical practices, the pertinence of religious constraints, and the reliability of French cultural values. This mission, conducted by thirty parliamentarians, was based on hearings with sixty-five medical, religious, and palliative experts (emergency and other physicians, nurses, palliative care staff, public health promoters, and ecclesiastics from all four major religious groups). During the hearings, parliamentarians under the direction of Jean Leonetti (a medical doctor from Antibes and a UnitГ© pour le Mouvement Populaire (UMP) parliamentarian) conducted one-hour interviews with a range of experts in the medical field. The fact that politicians selected a large number of experts and listened to their daily practice seems to make the French political establishment “partisan” and to make enhancing the meaning of a moral catastrophe central for the suggested institutionalized practice of the end of life represented by the 2005 Leonetti Law. The majority of the medical experts called to testify at the hearings were affiliated with leading public-health institutions. Among those testifying were the already mentioned Emmanuel Hirsch, Marie de Hennezel, and Philippe Letellier, who were already well known as “public intellectuals” who since 1999 had promoted the discourse on palliative care and on what constitutes “good dying.” Also among the sixty-five persons testifying were medical associations, nurse associations, and the Association for Palliative Care; medical doctors, however, constituted the majority, and these twenty Page 107 →medical doctors were each granted one-hour interviews, with the result that their personal testimony constituted the bulk of the professional testimony.19 The more or less top-down perspective of the parliamentary mission is apparent if we look more closely at the choice of particular experts and institutions, which are in fact trained by their profession or their role as public

intellectuals to present their opinions on society. The structure of the tasks of the parliamentary mission suggests that it interviewed established and respected experts not so much to challenge them as to comply with them. The questions posed to the experts were rather nonspecific and open—for example, “Please tell us the reality that you [wish to] experience”20 and “What about the refusal of treatment, the living will, and the trustee?”21—and differed according to the expert’s specialty, although each expert was asked about his or her practice, and specifically invited to offer his or her own perspective. Experts were invited to explain individual contexts and specific emotional relations regarding the issues. Most did so. Witnesses spoke about their personal feelings when they had to face dying patients. For example, one emergency physician in Paris detailed three cases on one evening, and a palliative-care nurse spoke about patients who had requested or not requested their death. Through these personalized stories, the witnesses not only demonstrated that they knew what they were talking about because they had experience with such requests, but most importantly that they were capable of “handling” them. The ability to handle these experiences became an important argument justifying their view on the matter of end of life. The topic of the end of life cultivated the mode of language used by both sides: the parliamentarians asked the experts in a humble tone as if they wanted to emphasize the delicate and unassailable status of their expertise. For their part, the testifying experts did not seem to hesitate to reveal their ambivalence or angst about the situations they found themselves in or the situations their patients were in. Similar language modes appeared when the ecclesiastics testified before the mission. The religious experts did not merely interpret their religion’s holy words but also expressed personal fears and anxieties that made their conclusions ambiguous. For example, the Roman Catholic cardinal Phillippe Barbarin, when asked about a terminal patient on life support, said, “To maintain a completely artificial life when the patient’s condition is absolutely irreversible is not an obligation of the society, nor is it moral, nor respectful of the persons involved.”22 With this statement,Page 108 → the cardinal showed, once again, how modern medicine has blurred the tradition values of life and death by creating a boundary beyond which a life can be “completely artificial.” The aim of the French parliamentary mission to depict the larger aspects and significations connected to the end of life (as stated in interview FR 5) was based on the principles of pluralistic societies, where members have different cultural and religious backgrounds, and tended toward a plausible and feasible intersection of those positions. The goal of debating the pluralistic view can be seen, for example, in questions from Nadine Morano, who was inclined toward what she called the “exception of euthanasia,” referring to exceptional situations in the patient’s state in which euthanasia could be allowed. With Cardinal Barbarin she revealed and discussed her view on euthanasia. But the moral paradigm of European Christian values prevailed in the cardinal’s answers. As he put it: “To sayВ .В .В . вЂI have had enough’ is not justified”—that is, suffering and being in pain are insufficient justification for pursuing self-chosen death. Wishing to die has to respect the will of God (Leonetti 2004, 183). Since a majority of the persons testifying at the hearings also evoked these concerns, they found their way into the final text of the 2005 end-of-life law. Annick Touba, director of the Syndicate of Nurses in France, mentioned her own practice, where she found that asking for self-chosen death had been rather “more than exceptional,” that is, exceedingly rare: “Personally, after having seen many people die in my professional experience of thirty years, there has been only one who asked me to help him die. To ask for euthanasia is more than exceptional. How could the patient understand that a physician or a nurse who takes care of them can also kill them, when they ask them to?” (Leonetti 2004, 303). Similarly, Marie de Hennezel, asked many times by the Ministry of Health to evaluate the end of life in France, engages an argumentation of larger responsibility going against the slippery slope in her report: To approach “the arrestation of the life” cannot be justified in the strict sense, nor can it be accepted as a simply normal practice. However, under certain conditions, it can be not only justified but also declared as ethical if we maintain the transgressed character of the matter. The ethical character of the matter consists in the notion of “making” and the one of “live”

[referring to the Foucauldian “making live”]. To continue questioning, to deal with the Page 109 →ambivalence, the complexity, and the paradox of the situation is the barrier against the temptation of simplifying and resolving the problem forever. (de Hennezel 2005, 17)23

Let us turn now to the semantic categories that form the law: mainly “fear,” “denial,” and an “interdiction to kill” aim toward a “rationalizing of the end of life.” The phrase “end of life” as used throughout the hearing was most often associated with denial, fear, pain, suffering, and physical and mental degradation. The semantic field of the regulation of the end of life that the hearing imagined within French society revealed a rather similar chain of signification: fear (from a painful end of life), denial (of death by healthy people), and freedom (to use one’s own body). The traditional concept of French political institutions as the only ones that create norms seems to outweigh the new challenges made to these political institutions. The generalizing tendency of the meaning of the end of life and the tendency to reflect the complexity of the medical decision-making are prevalent in the text of the law and are also reported by many physicians (Leonetti 2004, 300).24 The “collegial (cooperative) decision” should guarantee objectivity.25 Through the obligation of each patient to name a “confidential person” on the release form, the cooperative character should be complete, also on the part of the patient.26 It seems as if the complexity of the topic encounters a moral response: nevertheless, the view of the society that “denies” the end of life and that wants to “forget” recalls the paternalistic discourse that indoctrinates the moral constraints and ethical principles and appeals to the broader acceptance and “respect.” There are nevertheless several reactions to the individual emotional experience with the end of life in the name of which private actors argue for euthanasia. The patient has the right to “say no,” and the medical collective has to “respect” that patient’s rights, but more particularly must respect the end-of-life process itself, especially for the sake of “rationalization.”27 Rationalization means exactly the negotiation of one’s own anxieties, hopes, and joys in the context of the expertise, the financial possibilities, and the technological or logistical instruments of both physicians and their patients. This situation was elucidated by some professionals during the hearings: the manifold ways people handle the terminal stage of a disease, the ways in which procedures are explained, the patient’s socioeconomic conditions that are indeed outweighed by the technical instruments of the respective Page 110 →hospital and its know-how in the end-of-life domain. All this suggests in fact a decision paradigm between the psychosocial state of the patient and his or her social environment (Leonetti 2004, 292). The discursive framing of the parliamentary mission refers to the institutional nature of the AssemblГ©e Nationale and of the palliative care centers whose “tactic has been a paternalistic one,” as one of the professionals stated who had not been involved in the parliamentary debates on the law but who had been active in the public debates on the end of life (interview FR 3). The emotional experience with the end of life is framed as a normative concept about what should be felt and done when one is facing death itself. Even though it seems probable that the effect of “trust” was present throughout the hearing process and had an impact on the final interpretation of the issue, this sort of trust seems to remain “among experts” or among governing and decisive authorities.28 This reinforces the dichotomy of “ignorant citizens against the experienced experts” that also emerged in the media discourse. During the first phase of my fieldwork between 2005 and 2009, both the end-of-life care professionals and the members of the parliamentary mission (or their assistants) replied to my question about how to interpret the public polls in France, which increasingly favored euthanasia, “These are the healthy ones” (interviews FR 2, FR 4, FR 5, and FR 9). One interviewee even labeled it an issue of assuming individual responsibility: “What does this claim oblige you to? What are the consequences of saying that you want euthanasia, when you are healthy and you do not suffer from anything?” (interview FR 1). Some of the political actors took this dichotomy even further by presenting it not only as the “healthy versus the suffering” but also as a matter of social class:

I took a taxi to one of the debates, you know. And this taxi driver, as they generally do, asked where I was going and what I was going there for. I told him that this debate was about euthanasia.В .В .В . He said to me, “Euthanasia, that is perfect. I agree with that.” When I explained to him that I am against it because I do not want to end my life with an injection, he suddenly yelled, “Ah, I don’t mean for me! For the others who want this. They should just have what they want.” .В .В . That is how these people think about that [topic], you know. (interview FR 6) The respondent used the taxi driver’s response, rather than the issue of not really taking care for others, as an argument to justify the moral and paternalisticPage 111 → position the parliamentarians adopted in the law. The respondent concluded: “In the years to come we will discuss more and more these questions of the very notion of life. We have to be careful” (interview FR 6). With these examples, we come to the important question of who knows what the end of life is really about—that is, who are the real “authorities.” We have seen personifications of the emotional experience of end of life produced by the media. In the hearing, other rhetorical measures were used to support the “rightness,” so to speak, of a particular view of the end of life. As quotations can be an effective tool to cast normative contents as generally accepted, the parliamentarian RenГ© Roquet used, as we have seen, quotations from Seneca. Leonetti referred to the “big names,” well-known bioethicists or “experienced doctors.” One of his principal references is the work of Marie de Hennezel, who in 2004 collaborated on a document that formed the basis for the parliamentary mission hearing. After the 2005 law had been passed, she conducted a survey of French hospitals and public health-care facilities engaged in palliative care.29 Deeply engaged in the debate, she repeatedly reminded the public that the existing law was sufficient and that it simply needed to be “understood” (MO, 22 March 2007). In the mode the supporters of the law used—arguing either in favor of the law or against every other proposition—we can observe that the dichotomy of “ignorant versus experienced” becomes a dichotomy of “good versus bad.” As these examples show, applying the semantic dichotomy of the “healthy ones versus suffering ones” and subsequently the dichotomy of “ignorant ones versus those who really care” to the end-of-life field is complemented by the principles of the conventional view of the role of institution: to forbid killing, respect moral constraints, and strive for objectivity. That is how the contract of communication of the enlightened institution functions along with intimacy in the parliamentary mission’s performance. This performance frames the emotional experience of the subject in relation to the difficult and ambivalent context, and so it becomes almost natural that the virtue of the patient can be secured only through the moral mode of language. Such an argument is supported, for instance, by a statement by Emanuel Hirsch: “Dignity becomes our only conceivable trump. It renders it possible for us to overcome disparate streams and bring them together in our common lives.”30 A similar contract of communication appears during the vote on the law itself. With its unanimous vote, the AssemblГ©e Nationale showed its adherence to the “generally accepted” moral context surrounding the end of life, as, for example, the conservative deputy Marionne Briot stated.31 Christine Page 112 →Boutin, the vice director of the parliamentary mission and a politician associated with the Catholic Opus Dei movement, proclaimed that only the physician can “safeguard the dignity” of the patient, a position that reinforces the general public’s acceptance of medical paternalism, in which the physician is endowed with supreme authority. Another intervention of the socialist deputy Jean-Marie le Guen during the vote criticized such a paternalistic view and used personal stories and experiences to accentuate the ambivalences of the matter that make a “general consensus” difficult. The categories of “general” and “unanimous” justify those ambivalences: the author of the law and the director of the parliamentary mission Jean Leonetti confirmed repeatedly that that law was a compromise between devoir (ought to do) and pouvoir (can do). In parallel, the unanimous vote becomes an argument against France’s rejecting the idea of a self-chosen death when this practice exists in neighboring countries. In that perspective, intimacy becomes accommodated in paternalistic discourse, which is constitutive for the activities of French political establishment from 2003 onward. Reactions to media coverage during both the parliamentary mission and the vote on the law shaped the emotional experience with the end of life as something to be tamed, to be “rationalized,” as explained in the law’s introductory text. This becomes

consolidated in the nature of the actors who support the 2005 end-of-life law. That they belong to a traditional institutional structure—parliament, a hospital, or a university bioethics department—fits perfectly with the paternalistic discourse. The notion of freedom can eventually be seen as a threat; as stated parliamentarian Roquet during the legal debate, “I am not going in this direction of freedom.” The taming of freedom in the parliamentarian debate allows the issue to remain, indeed, within the conventional understanding of what “life” and “death” should be. In this context, the acknowledgment of “suffering” is linked to the “natural” understanding of the life course and is interpreted within the Christian tenet of our being able to bear whatever God sends our way (as argues Goffi 2004, 182). The argument for a unanimous decision of the AssemblГ©e Nationale reappeared in the spring of 2008, when Chantal SГ©bire’s death opened the question of the applicability and usefulness of the Leonetti Law and the unanimity of the vote was the last bastion of the law’s supporters. Until Chantal SГ©bire, state authorities kept their self-conception as an enlightened institution that has carefully made a collective decision concerning the end of life, and it is that carefulness and enlightenment that entitle it to respect. Page 113 → The “Ignorant” Public Fights Back Two important ideas influenced the meaning of the end of life as it was understood by the French public, nonprofits, and the media during the 2003–5 parliamentary inquiry. First, through the Humbert affair, the vision of the “right” way to take somebody’s life was modulated by the personal statements of Vincent’s mother, Marie Humbert, and of Frederic Chaussoy,32 the physician who administered the lethal injection. Vincent Humbert is seen as one who “knows” firsthand what it means to be unable to continue living. Marie Humbert is supposed to “know” what it means to love her son so much that she can accept and honor his request to end his life. Their emotional experiences create empirical evidence, not comparable to the impersonal moral discourse pursued by the parliamentary mission and conveyed by other institutionally established actors that pronounce themselves against legalizing euthanasia. We see in the discourse of the private sphere two figures—Vincent and Marie Humbert—whose feelings and assumptions are merely subjective but that are given a normative value by those who do not have direct experience with the end of life. This is the reason they can serve as models of good dying for the private sphere. Additionally, on a more abstract level, the intimate face of the end of life that Vincent’s story offers outweighs the conventional moral narratives at stake in the discourse of the parliamentary mission: if Vincent wants to die, if he sees his life as “not a life anymore,” then the convention must succumb to change. So if the current practice of care for terminally ill people is seen in the logics of an institutionalized practice, Vincent offers elements of a subject with a certain emotional experience (i.e., that of facing dying) suggesting a person should be able to “manage the end of life” on his own. In a similar way, his mother offers an emotional experience with the end of life that is based on her love for her son. The context—the terminal and irreversible state of the illness—modifies the position of both subjects. Moreover, the link between the young man and his mother, the emphasis on their close and loving relationship (as reported by the media, e.g., Weekly Express, 7 April 2007), consolidates the nature of these subjects. They die for love and kill for love; there are no other meanings released in this (emotional) constellation. Simultaneously, as the discourses of the AssemblГ©e Nationale and of the professional networks strengthen the division of the population into those who know (medical experts and hospice patients) and those who do not (“healthy ones” or “ignorant citizens”), they enable the construction of a Page 114 →kind of “protest scene” that stimulates the opposite of what is proclaimed and suggested in the political activities of the French parliamentary mission.33 This goes along with international references to countries that have legalized some form of self-chosen death and that the protest scene uses as evidence that the other opinion exists. Due to this opposition between those who know and those who do not, the formulation of the concept of the end of life is

influenced by a sort of a priori conception, which then influences the language of actors fighting for legalizing euthanasia by giving them the possibility of building a contract of communication based on opposition to the French institutional establishment and subsequently also to conventional meanings.34 To redefine the conventions is related either to the context—the practice of the end of life must be developed further in the face of new social trends and scientific findings—or to the nature of the subject that carries these contexts. All three protagonists are “emotional” in the sense that they openly present their disorder and uncertainty and build a perfect contrast to the compact, conventional appearance of the argumentation of the French political establishment. The emotional experience provides the civic sector the compass to orient itself in the controversy and to present a necessity to innovate the French legal and societal convention of “good dying.” The trust in the “heroic figure” of Marie Humbert and of Vincent’s physician Frederic Chaussoy, the acknowledgment of their personal destiny, provides an important link with the interpretation of their understanding of how the end of life should be or should not be “good.” From that point of view, their own emotional experience with the end of life is linked to the general meanings so that their specific situation becomes a symbol of “good dying.”35 It follows that ADMD’s formulation of what good dying should be is strongly related to this personal dimension, since it is not shaped by moral constraints but by the interpretation of the constraints that pass by emotional experiences of the actors represented in the media debate. In ADMD materials posted on its website as the debate developed, the categories “fear” of dying and “denial” of death are presented as arguments for the “rationalization of end of life.” This is interesting because the same categories are used by the authors of the law as a reason for being against any move toward legalizing euthanasia. The ADMD’s concept of “rationalization” is founded on respect for the patient and her right to “say no,” that is, the right to refuse treatment. The development of this argument calls for “management of life and death.” This phrase is also significant regarding the Page 115 →development of the end-of-life care sector in relation to the increased involvement of the patient, either in terms of financing the care or in terms of assuming the tasks previously performed by medical institutions. In contact with conventional views on dying (especially “Thou shalt not kill”) appears a new meaning of managed death. The paradoxical phrase “Kill your neighbor,” which appears sometimes in Internet discussions, becomes acceptable because “compassion” overrides the convention that forbids killing. Remarkable in this respect is the interpretation of the moral concepts of “respect of life” and the “acceptance of death.” As reported in the media, due to the “pain” and “suffering,” the life of the end-of-life patient is—seen from his or her own perspective—not a “life” anymore. Again, we see emphasis on the individual’s view of the issue. The view of life or a “nonlife” pushes the argument toward social acceptance of a self-chosen death. This is articulated in “respecting the patient” in terms of her right to say no to a treatment. This link between a “neighbor” for whom you should feel compassion and a “patient” conveys the link between citizen and patient mentioned earlier and joins the general parallel here that both figures are framed by the same self-governing practice. Hence, the ADMD’s argument is that each of us should accept the idea of terminating the life of our neighbor if she wishes us to do so.36 Due to this shift in the interpretation of what “life” means and what “death” means, “Kill your neighbor” can be seen as its consequence, which has the potential to be seen as a “right” concept of the end of life. This concept of a good dying emerges apart from the parliamentary inquiry as well as the ethical debates pursued in medical associations or at universities. It emerges as one of the individual instances of the collective battle over the end of life. The ADMD uses this individual dimension adroitly and continuously engages in opposition to the activities of the French parliamentary mission. ADMD supports the media coverage of other stories from abroad, especially those that include requests for self-chosen death. The ADMD nevertheless associates self-chosen death with the same values of dignity, respect, and solidarity invoked by the parliamentary mission.37 What differs is not the semantic field of good dying, but its contextualization within the given structure and especially within the context of the emotional experience.

The explicit exposition of the emotional experience in the personal stories on the basis of which the subjects present their arguments functions only through a strong link to the personification of this emotional experience accomplishedPage 116 → through media coverage. More specifically, the media develop the debate from the point of view of the emotional experience with the end of life of three persons directly involved in the affair: Vincent Humbert, Marie Humbert, and FrГ©dГ©ric Chaussoy. The role of the emotional experience here is not just one component of the general notion of the end of life but its constitutive core, which also implies that individual stories shape the perception of the whole concept and also their eventual acknowledgment. For that reason, this discourse can appear to the public as more appropriate than general moral discourse, which is in fact already relativized by the redefined cultural values and by the evidence of other international experience. The general moral discourse deployed by the French political establishment investigates primarily citizens’ obligations (toward law, religion, spirituality, tradition—in brief, toward conventional understanding of “good dying”) and not their passions and wishes when they are confronted with this diversity of values and opinions. What is more, these obligations contrast with family members’ or friends’ emotional experiences of the end of life or when they read about this experience in a media that deploys hyperbole and powerful metaphors of inevitability, fatality, and the like. Through this mode of language, the discourse of the private sphere shows itself to be empathetic toward the emotional experience of the individual—and anyone could be that individual. Furthermore, the emotional content is consolidated through the “protest scene” that needs per definition a “hero” who provokes a response, and to whom the externalization of her emotional experience is in fact inherent. The moralizing discourse of the public sphere nurtures the protest scene, as it seems to lack the link to the emotional experience presented through the three figures in the Vincent Humbert affair. The public sphere pushes them away from the discussion: as one of the experts from palliative care center emphasizes, “These are different stories. This does not concern our daily routine” (interview FR 18). The director of the parliamentary mission also expresses concern about whether these are real cases: “I do not think this is what people really experience—it becomes inflamed by the sensational logics of the media. They have been used by the ADMD” (interview FR 6). The role of emotional experience further diminishes the dichotomy in the law, which distinguishes between “healthy ones” and “suffering ones.” The suffering ones are Vincent Humbert and his mother, but they do not appear at any moment in the discussion about the law. What is more, the suffering is in fact suppressed by the idea of acceptance of death and by the depictionPage 117 → of a moral catastrophe that would result if one dared open the discussion, to open Pandora’s box, so to speak. One of the assistants to the parliamentary mission indicated to me that the law would not resolve the problem of young Vincent, but that doing so was not the aim of the law (interview FR 4). The Leonetti Law was not intended to respond to the emotional atmosphere or to solve this media case; rather, it should, rather, “tame it” (interview FR 1). This attempt to close the controversy will become significant later in this chapter, since we see in the cases of Chantal SГ©bire and Vincent Lambert that the law did not terminate the debate, but instead opened it. This brings us again to the argumentative dichotomy between “ignorant ones” and “those who know, ” which is supported by the composition of the parliamentary mission, which assembled experts from the field of care, ecclesiastic authorities, and other persons the French institutions generally see as established. The dichotomy is at the heart of the protest and was expertly used in ADMD activities.38 If this dichotomy still functioned as an argument in the context of the debate around the 2005 law—at least for political actors and experts and for some of the French public—and helped to garner the unanimous vote of the French Assembly in April 2005, it became destabilized through the Process PГ©rigueux in spring 2007, which begins a novel stage for the controversy. Process PГ©rigueux: Reframing the Conflict as Convention versus Invention After the unanimous parliamentary vote in 2005, the media sporadically ran stories that seemed to confirm the pertinence of the 2005 end-of-life law: people suffering from too much treatment or from treatment that did not improve their health but only prolonged their suffering now had the option to end it, because this was what the

stopping of the “unreasonable obstinacy” framed by the Leonetti Law foresaw. The tone of published interviews with care professionals at that time indicated their satisfaction that the French state did not succumb to the emotion driven by the media coverage because France permitted people to live with dignity even as they lay dying. But in spring 2007, the situation changed when the Chantal Chanel and Laurence Tramois court cases captured the attention of the media. Dr. Tramois and the nurse Chanel were brought to the court of PГ©rigueux, charged with “poisoning” their patient. Chanel had received in 2003 an order from her superior, Laurence Tramois, to inject a lethal substance into a patient sufferingPage 118 → from cancer. What is more, the case of Process PГ©rigueux broke at a time when the French public was already well informed by the media that Marie Humbert and Dr. Frederic Chaussoy had received non-lieu, which means that the court determined it would not take up the matter. The Process PГ©rigueux cast new light on the end-of-life debate by shifting it toward a cleavage within the expert community itself. The Process PГ©rigueux enjoyed good political timing, coming three months before the presidential elections. From this point of view, the ADMD didn’t need to develop further activities favoring a law legalizing euthanasia. What had earlier been treated as coming only from abroad struck the center of the expert community. Thus, the Process PГ©rigueux presented a considerable challenge to both dichotomies: “healthy ones versus suffering ones” and the “ignorant citizen versus experts.” The rest of this section explains these challenges by investigating the “hiatus between the law and the public opinion” (NO, 18 May 2006) as a medical dispute around the process, discussing the political consequences of this dispute. The immediate context of the Process PГ©rigueux was a completely personal setting that countered the moral discourse against euthanasia, which argued that only healthy and ignorant patients claim to be in favor of euthanasia. Dr. Tramois was a longtime family friend of the patient she had been caring for. She “knew” the environment; she “respected” the family and was in turn respected by them, the media reported. Within this intimate face of the end of life, she decided to “put an end to” her patient’s suffering. For that reason, she was immune from the accusation that she lacked experience or was not empathetic. Her statement before the court was widely quoted in the media: “It is true; I have not respected the code of medical deontology. But I have proceeded in the name of compassion and in the name of the wish of the patient who did not want to suffer anymore. I do not feel culpability but responsibility” (MO, 6 January 2006).39 “Responsibility” became the crucial element in the way she and Chanel as professionals justified their act, offering justification to many others facing the same type of end-of-life decisions. The unjustified shame that fell on Tramois and Chanel warranted a public response by other medical professionals who identified with their fate, having performed similar acts of mercy themselves. The “Manifesto of 2000” marshaled such professionals and was published just before the final hearing in the Process PГ©rigueux on 8 March 2007. Two thousand professionals joined forces to collectively request release of their colleagues from prosecution, demanding revision of the legislationPage 119 → in order to “give a codified embedding” to such procedures of “compassion” and “responsibility” (NO, 8 March 2007). The environment of the process supported this vision. Not only did Paulette Druais’s family stand behind both defendants (NO, 15 March 2007), but in April 2007 the court also handed down a relatively soft sentence: Laurence Tramois received one year in prison and Chantal Chanel was released from custody. This decision was consistent with the “non-lieu” concerning FrГ©dГ©ric Chaussoy and Marie Humbert, and, as had the earlier case, it destabilized the unanimity of “those who know.” What happened through the Process PГ©rigueux was that the vision of an “enhanced death” was placed in a new context in which it must be seen as a “good dying,” not only in terms of public discussions but also in terms of the Leonetti Law. The medical personnel who signed the “Manifesto of 2000” criticized the Leonetti Law for “not addressing the anxiety at the end of life” (MO, 29 January 2007). They wanted this petition to trigger a “responsible” debate on the issue that also delved into its taboo aspects. The media was also caught up in this novel dichotomy within the expert community: “These people from the care staff are aware of the difficulty, of the drama that many patients have to face together with their families when suffering

from completely incurable diseases. They reveal this moral and physical suffering” (NO, 8 March 2007).40 At this point, the drama, as the press framed it, was reported by “those who know,” those who in their daily professional lives meet dying patients and their loved ones. This moment in the development of the French debate can be seen as one of the elements that led to acknowledgment of a specific state or deed. This moment in the French end-of-life debate was ensured through the presence of medical professionals in the conflict that—before the Process PГ©rigueux—had been represented as a conflict between “healthy ignorant citizens” and “experienced experts.” The medical experts who signed the manifesto targeted the French medical practices that seemed coherent and unified during the public debate on the law between 2003 and 2005. The manifesto in effect revealed to the public that the experts were not as unanimous as had been claimed by the political establishment during the debate and subsequent vote on the law. But even more important here is that this important deminasion of the public debate appeared through emotional experience: the confession, the call for “understanding the compassion,” and finally through the protest itself. Furthermore, as the manifesto’s argument was concentrated around “responsibility,”Page 120 → the petition lessened criticism directed toward the private sphere to the effect that euthanasia represents ignorant behavior on the part of healthy people who do not respect others. At the same time, however, this shift in the meaning of compassion at the end of life resulted in an important cleavage within the French medical community. Two arguments were crystallized within the medical community: on one side were the supporters of the “Manifesto of 2000,” who saw helping someone to die as an act of medical responsibility. For this reason, such an act has, under certain circumstances, a moral justification. On the other side were medical professionals who supported the formulation of the 2005 end-of-life law and promulgators of palliative care who warned against such justification. Self-chosen death, or an enhanced death in this specific example, is a “wrong answer” to the drama of the end of life (FI, 21 February 2007), submitted Marie de Hennezel. Philippe de Villiers, director of the Alliance for the Rights of Life (Alliance pour les Droits de la Vie, APDV), criticized the medical professionals for bringing ambiguity into the medical profession itself. As he specified, the patient will ask, “Is it because the doctor wants to save my life, or because he or she wants to kill me?” (APDV, 20 April 2007). With such an extreme question, de Villiers and many other palliative care promulgators used emotion-laden rhetoric to cultivate the emotional tone of the debate. Although they did not stop to evaluate the emotional experience individuals might face at the end of life, they distinguished these experiences through their rhetoric as good or bad emotional experiences. The debate evolved in a discussion over the cultivation of emotions, which was refreshed in the course of the media coverage of both the Process PГ©rigueux and the “Manifesto of 2000” and took place also on the level of the legal debate. The law “solves very well the problems of the dying ones,” claimed Jean Leonetti in trying to respond to and calm criticism (NO, 16 March 2007). Leonetti was supported by the French Association of Palliative Care (SFAP), which initiated a counterpetition titled “Against These 2000.” Leonetti and his supporters criticized the medical professionals signing the original petition for having succumbed to the “media campaign” and accused them of being involved in the “lobby for euthanasia” (NO, 7 March 2007). Again, the conclusion of this debate for those who were against legalizing euthanasia was a moral one articulated along the rational evacuation of the emotional experience: not only were they posed against the practice of euthanasia in general, but by emphasizing this opposition they claimed the Page 121 →other side had simply not understood the general idea of the law. As evidenced by the media coverage, awareness about the options provided for in the 2005 law was not sufficient; “Some teams still have something to learn” (MO, 28 February 2007). Philippe de Villiers, among many voices raised in that matter, takes here a moralizing approach in an attempt to prick the consciences of medical professionals who signed the original petition: “But these physicians do not have this kind of listening ear [of palliative care]! For them, suffering is outside the concept of human dignity.”41 By using such moral phrases, euthanasia opponents seem to pursue the same game as in the

legal debate before 2005. They present euthanasia as “dangerous,” “immoral,” “wrong,” and resulting from an “ignorance” of the other possibilities: “The urgent thing today is that all patients have access to palliative care in satisfying conditions” (NO, 8 March 2007).42 Nevertheless, by emphasizing the misunderstanding of the law, euthanasia opponents are caught in their own critique, because they are admitting that the implementation of the new policy on the end of life has not been successful, which is partly supported by press reports (such as “The Leonetti Law Is Forgotten,” MO, 14 April 2007). The lack of awareness of the law seems to be the immediate political consequence that is taken into account by ADMD, which initiated new discussion about “having other options.” Already back in 2006, ADMD had embarked on a battle for a different law, negotiating with political actors who had previously demonstrated that they would not be against an “exception of euthanasia.” Some of these actors use more euphemistic terms, such as “aide to a voluntary deliverance at the end of life.”43 Further subtle rhetorical differences came into use after 2012. In the course of lobbying for this other law, the activists and advocacy groups compared what happened to the two medical staffers in the Process PГ©rigueux with what had happened to Marie Humbert and Dr. Frederic Chaussoy, the actors in the Vincent Humbert affair. These two actors actively entered the debate in 2007: Chaussoy criticized the process as a “continued pursuit of the physicians” (NO, 16 March 2007), and Humbert claimed in various media and media debates that she was “astonished and shocked.” Not only were they both engaged in multiple protests outside the court of PГ©rigueux against the punishment of Laurence Tramois and Chantal Chanel, but their very presence reminded the public of the 2006 decision of the French justice system. The fact that neither would be punished opens for euthanasia proponents a door to public acceptance of the possibility of some form of self-chosen death.44 Page 122 →As noted earlier, the Process PГ©rigueux broke just two and half months before the presidential elections, timing that proved advantageous for public acceptance of euthanasia and for reopening the debate. At the time, various media reports pointed to the fact that the French population was “waiting for the new law” (FI, 30 January 2007). In this context, SГ©golГЁne Royale, the socialist candidate, opened the door for the debate in 2007 by agreeing to discuss the law and to consider “euthanasia for вЂextreme’ cases” (ADV, 20 April 2007). In the socialist platform before the elections, she states clearly: We will take charge of a project “Law Vincent Humbert,” which ensures medical assistance for end of life with dignity. This law would enable physicians to help their patients by accompanying them through the end-of-life process, while observing very strict conditions that respect the will of the patient and his or her environment. This assistance would consist of active help offered to persons in the last stage of an incurable disease and to those who judge their state of dependence not compatible with their dignity.45 The socialist project that favors euthanasia is not surprising. Its link to ADMD goes back to 2006. One of the main figures who promulgated the idea of the self-chosen death was Mireille Jospin,46 the mother of former French prime minister Lionel Jospin, who had cooperated with ADMD; her personification of socialist values combined with the experience of age lent credibility to the effort in the eyes of the French public.47 At the same time, the socialist project did not ignore the fact that, after the Process PГ©rigueux, 87 percent of the French population supported euthanasia (MO, 15 March 2007). The opinions of the other presidential candidates (Francois Bayrou, Nicolas Sarkozy)48 on legalizing euthanasia were seen as “less radical” (ADV, 20 April 2007), but they were in fact not completely opposed to the option. This disparity of opinions concerning the possibility of euthanasia means that from 2007 onward there is no more “unanimity” of experts, as had been claimed during the legal debate in 2005, but what Le Monde called a “political hiatus” (16 March 2007). The reactions of the socialist project to the PГ©rigueux Process as well as the surrounding media debate transpose the controversy to a conflict of two political views of what the institution should offer to the individual. Although Nicolas Sarkozy argued during his campaign that there are “intolerable sufferings” and that we cannot stand by “and watch” (Come4news, 4 May 2007), which

prompted a range of “surprised” reactions (ADV, 24 February 2007) among proponents of palliative Page 123 →care, he did not open the debate after being elected in May 2007.49 Instead, Chantal SГ©bire did, and we can see finally enhanced efforts to understand the end-of-life controversy as the empowerment of the individual against paternalism find their way in the institutional landscape.

Testing Liberal Democracy: The Pitfalls of Intimacy After Chantal SГ©bire was found dead on 19 March 2008, and after the autopsy confirmed that she had committed suicide with a barbiturate from Switzerland, the SГ©bire case regrouped the actors into two camps, those who claimed that the French society was hostile to the dying, thereby provoking this kind of action, and those who saw the 2005 Leonetti Law as responsible for SГ©bire’s desperate act. Both sides slowly mobilized for change. Initially there was deep shock about the personal tragedy of SГ©bire’s suicide. ADMD (and other right-to-die advocates) used her suicide to criticize French politicians for not having provided enough assistance to her and for “pushing” her into an undignified death that she would not have had to experience in other countries (ADMD, 17 March 2008). SГ©bire’s personal tragedy could no longer be framed by unique logics because she was, after Vincent Humbert, the second and. most likely “not the last one” (MO, 14 April 2008) to ask for legal standing to commit suicide. The iterative appearance of such a demand for euthanasia reinforced voices from the expert community that were already clamoring in 2007 for euthanasia legislation because it would bring transparency to the practice. In that tone, the daily LibГ©ration wrote, “Let’s stop labeling these words as вЂdiabolic’ as soon as they disturb us; the criminalization of euthanasia is not a good solution if it does not push the debate further.”50 The main narrative in the debate henceforth became one of “negotiation” itself, the need “to debate and to speak openly,” as was proposed by Bernard Kouchner (FI, 19 March 2008). This need for negotiation was reinforced, once again, by SГ©bire’s claim that she would go to Switzerland because it completed the argumentation loop that a legislative solution is possible. So the question “Why not in France?” became an strategy by which to call for redesigning the end-of-life law. The story of SГ©bire’s suicide as one that resulted from the limitations of French law frames the critique of the Leonetti Law as one that exposes the democratic deficit of the French state. Le Monde pursued this line by asserting that “sanitized democracy has permitted the development of patient Page 124 →rights that are not really compatible with medical paternalism.”51 French medical paternalism thwarts discussion of self-chosen death and restrains access to information about what the end of life “is really about” (LI, 25 March 2008). This framing invites observers to imagine the relation of the patient and the doctor as a question of democracy, dealing with the relation between the individual and the collective. It invites us to move toward a citizen whose emotional experiences with the end of life are not “dangerous” or “immoral” but rather gradually and incrementally acknowledged and granted space within political activities. Through this parallel of a patient’s voice becoming a citizen’s voice, the SГ©bire case demands intimacy as an empowerment of a citizen who wants to take part in the democratic debate about death and dying. This parallel finally blurs the earlier unanimous position of the French political establishment, a position that by 2007 had already been rendered complicated as a result of the PГ©rigueux Process. The rising call for reframing the law, and Leonetti’s declaration that the law does not apply to cases such as SГ©bire’s, can be read as a gradual admission by the French political establishment that it alone could not define what “good dying” entails. The call for revisiting the law became in fact a call for empowerment of the citizen, who should become the negotiation partner. While the French public health discourse self-righteously claims to represent democratic patients, who are selfgoverning and self-paying, it almost systematically denies the eventuality that this could lead one such patient to choose his or her own death. This creates a paradox in the patient’s empowerment and influences his or her role as a citizen. The ambivalent way in which this empowerment is deployed during the debate can therefore be seen as the main reason that public polls show increasing support for legalizing euthanasia. At the same time, this empowerment paradox can explain the ambivalent implementation of the Leonetti Law. This paradox leads us to

examine the post-2008 course of events. The Unsuccessful Taming of the Leonetti Law Critique Until the SГ©bire case, any demands that intimacy be included in the legal and expert discussions were resisted because members of the political and medical establishment saw behind them a “typical example of media manipulation” (interviews FR 1 and FR 3). The same sort of political positioning can be heard on the side of the ethical community. The ethical line of argumentPage 125 → became stronger, especially in spring 2007, after publication of the “Manifesto of 2000,” which reinforced the dichotomy of “those who know” and “those who don’t know” by evaluating medical professionals as either “good” or “bad.” Such polarization of society sows doubt about the solidarity of the law. Consequently, this cleavage in the medical community results in a “danger” for its leaders; the danger of suffering is overwhelmed by the danger of being “ignored” in its own experience, and eventually its responsibility and the will for empowerment. As supporters viewed the Leonetti Law, its possible faults—made apparent through the mediatized cases—were minor compared to the achievement of its unanimous passage in the AssemblГ©e Nationale; further, they found it appropriate that the individual remained “secondary” (especially in response to the Vincent Humbert affairs, as one of the deputies’ assistants confirmed in interview FR 4). Leonetti himself claimed in March 2008 after SГ©bire’s death that “the case of Chantal SГ©bire is not covered [by the law]” (PEL, 26 March 2008). However, he concluded by saying that SГ©bire did not want to use available palliative sedation and that she refused treatment that could have provided “suitable solutions for her situation” (PEL, 26 March 2008). This last statement has a paternalistic tone in connection with the emotional experience. In short, Chantal SГ©bire’s suffering would not have been necessary if she had accepted the “suitable” solution. Not only does this construct SГ©bire as one who “does not know,” but it also shows, once again, the link between evaluation of a situation and evaluation of the emotional experience. Since the SГ©bire case resulted in national awareness that this situation could happen to anybody, the evaluation of her situation turned to evaluation of French legislation and to the question of why France couldn’t simply have legislation similar to that of other countries. This suggests reactions from both the media and ADMD referring to SГ©bire’s statements that she would travel to Switzerland in order to get what she thought she deserved. Although she ultimately remained in France, she ingested a substance available only in Belgium and Switzerland, a detail that the civic sphere raised as a mirror to French end-of-life practice. In that sense, the French practice of the end of life appears to be a leaky one, either because it enables citizens to secure illegal drugs or because it drives suffering people to illegal actions. What is more, that end-of-life practice in France is leaky is the opinion not just of advocates for self-chosen death, and these other voices become more relevant after SГ©bire. Just a year after the Leonetti Law was implemented Page 126 →in 2006, the ethicist Marie de Hennezel critically observed that “good” end-of-life practice (2006, 16) was still not available everywhere, and that there remained a disparity between the daily routine of endof-life care and the picture drawn in the law (2006, 18). Additionally, after widespread acknowledgment that the Leonetti Law was not only insufficient but not even being implemented, the French political establishment found before it a new challenge. From the medical point of view, these challenges were complicated by the limits of care: somewhere between 10 and 30 percent of illnesses cannot be cured (de Hennezel 2005, 181). In addition, what patients define as pain and how they tolerate it changes with improved medical standards, and this trend raises the cost of pain relief medication. In the general understanding, people in pain are suffering without dignity. “Painful” also implies that such a life is of little value. As critique of Leonetti Law developed, the paternalistic discourse was classified by the politicians themselves as an insufficient response to the events experienced and evaluated by the French public through media and through public events. Despite the fact that the argument had originally been perfectly consolidated around supporters of the law who were experts on standard end-of-life practices, and despite the fact that the argument in favor of the Leonetti Law eloquently linked the end-of-life emotional experience with individual responsibilities, the public understanding of the law went more and more astray from 2008 onward.

The critique of the Leonetti Law can be summarized by the difficulty the patient faces in getting what she wants, regardless of whether that is a self-chosen death or “proper care” (MO, 14 April 2007). Although both groups—those for the Leonetti Law and those against it—agree on this need for negotiating within the new conditions, they nevertheless arrived at different political conclusions. Either the emotional experience with the end of life is unbearable by its nature and one has to respect it by developing our moral agreements and conventions, as the argumentation of right-to-die advocates implies; or the emotional experience with the end of life is as it is because our moral agreements and conventions don’t allow us to understand its true face. An example of such “moral agreements” is a statement from Zenit, a medium that follows bioethical debate in France: “Since the mediatized affairs of euthanasia have labeled the idea of self-chosen death as вЂpositive’ or as an вЂact of compassion,’ we observe that women ask themselves whether they are bad mothers if they continue to take care of their severely handicapped childrenPage 127 → instead of killing them; we observe patients believing they should ask for euthanasia instead of setting on a path toward a better situation [for themselves] with their illness.”52 Similar moral stories appeared in the interviews with French experts that continued to display the end-of-life controversy in France as one pitting people who know what the end of life entails and what it does not against those who do not know (especially interviews FR 8, 9, 17, and 18). This is why the discussion of the Leonetti Law develops into a negotiation of two disparate imaginings of how to interpret these emotional experiences—such as fear and anxiety—and how to cultivate them in a specific context (in this case, in the context of the unbearable suffering at the end of life). This negotiation implies engagements of specific subjects that carry those meanings and arguments: either the moral heroes of the AssemblГ©e Nationale or the emotional heroes of the media. Both of them suppose respective modes of action of the individual and of the collective. The individual dimension—emphasized by the media cases—is criticized by expert communities (“Oh! These deaths are just too mediatized!” [interview FR 9]), which in fact nourished the communication gap between the public and the stakeholders that was claimed by the French public on several occasions in the media debates. That everyone must have “the choice” of self-chosen death was one of the claims presented by the media (PEL, 26 March 2008), but many experts lamented these choices, claiming that there “are better” choices (interview FR 9). Tugdual Derville, the spokesperson and spiritual father of Alliance pour la Vie, confirmed the political consequences by blaming the media for posturing arguments that are too emotional and for claiming the role of “thought police” through its praise of the “good ones” (Zenit, 21 March 2007). The “thought police” metaphor directly opposed the emotional atmosphere raised through the three cases and continually influenced the debate on end of life. The emotional context (MO, 6 January 2006) of the issue as a whole was evoked explicitly but also implicitly when the media simplistically framed the conflict as black and white: “we the public” against “they the politicians.” Exchanges such as these reveal a communication abyss that swells after SГ©bire’s death and finally speaks for the critiques of Leonetti Law. There is an apparent paradox on the side of the supporters of the law: while the patient is invited to be engaged in the complex matter of the end of life through his or her solidarity, the political establishment itself does not show itself to be in solidarity with the patient. Moreover, within the enhancement of the Page 128 →self-regulation and self-engagement of the patient in his or her health care, the need for patient empowerment is necessarily transposed to and manifested on the political level. If the patient is supposed to contribute to the health-care system financially, she expects reciprocity, that is, that someone will respond to her needs and wishes and accept how the patient does behave, rather than remind the patient of the conventional contours of how patients should behave. Through this paradox, the dichotomy of “those who know” and “those who don’t know” turns against Leonetti Law supporters. Although the patient is, indeed, asked to behave as experienced enough to assume the risk of demographic changes—that is, to assume them either financially or morally—once the patient pronounces the idea of a self-chosen death, she is suddenly deprived of that experience. That is also how it happens that political institutions are characterized (especially by ADMD) as being unresponsive and insensitive to the needs of the individual. In those terms, the question of what entails acknowledgment of the individual emotional experience, and how far this acknowledgment goes, constitutes the next challenge of French political

institutions. The discourse against the Leonetti Law finally succeeded in building a meaning of the end of life related to personal stories of unnecessary suffering—literally, suffering that is not “needed” because there is an alternative. An increasing number of voices from expert communities were attending to the fact that obstructing negotiations and shutting down debate will not prevent hospital staff from engaging in euthanasia: they are already performing euthanasia and indeed have been doing so for some time. Some of the earlier proponents of the Leonetti Law changed their positions: Nadine Morano, former member of the parliamentary mission, declared her preference for the “exception of euthanasia” (NO, 19 March 2008), which she was in favor of during the mission though in the end she voted for the Leonetti Law. Jean Leonetti admitted in many interviews that the SГ©bire case “is not included in this law” (FI, 13 March 2008), that is, that it fell outside the limits of the Leonetti Law, and that the law had to be “better explained” (PEL, 26 March 2008). Related to this tone shift, some experts no longer opposed palliative care and euthanasia as two distinct measures but recognized that, in some cases, the demand for euthanasia falls within the palliative care setting, when all other pain relief measures have failed, when the social contact of the patient has been looked after, and other conditions are met (Ollivier 2009). Such Page 129 →decisions might simply enter into the care scenario at a later stage in the patient’s terminal illness, when even palliative care seems to be unbearable. Toward Empowerment through Intimacy: The Sicard Report The moral question of what terminally ill individuals should do with their life merges with the political question of what they could do in terms of their empowerment; the latter henceforth redefines the horizon of the citizen’s intervention in the French debate. The political establishment, in the midst of this “want/can” versus “must” tension, entertained a deadlocked dynamic of repeated initiatives from both sides of the argument. So, the question that appears from 2008 onward is whether and how to calm the spirits of the French public, which favors permitting euthanasia. Cases similar to the Process PГ©rigueux, the Vincent Humbert affair, and the SГ©bire case were brought forward in the media and revealed, once again, the usual narratives on “good dying,” emphasizing the “dignity” and “autonomy” aspects and questioning when a life ceases to be a life and whether choosing death should be criminalized. Such was the case of Elodie Nahmani in 2009, who suffered from cancer and who asked her mother to end her life; the mother refused and sought advice from hospice staff. Reporting the case, the media quoted the mother as saying that Elodie was “happy” now—after the family contacted professionals who specialized in addressing the psychosocial burden of such suffering—as she could see finally a certain “quality of life” (FI, 27 November 2009). This story revived concern that end-of-life situations are difficult for people outside the situation to grasp and that laws do not provide clear answers. These cases and debates refreshed already known conflict lines. On one side of the line stood those who asked that some form of self-chosen death be legalized and who were seen by the other side as irresponsible, manipulated by public opinion, or too emotional. On the other side of the conflict line stood those who wanted to maintain the status quo and who alerted society to the possibility of a slippery slope and to the likely harm to society’s moral principles, especially when the lives of suffering people who have no avenue to defend themselves before society are at stake. Nevertheless, members of this second group were seen by their opponents as incapable of acknowledging what all these suffering people go through. This bias is reported by the media coverage (especially Figaro) as well as by the expert community literature (Leclerq 2013; Thiel 2012, 2013a, 2013b) and by the National CouncilPage 130 → of the Order of Doctors (Conseil National de l’Ordre des MГ©decins). The expert debates, prompted by media cases and legal suggestions, emphasized the repartition of the arguments and their cleavage around the individual and collective responsibility for the one who is suffering. Some of this argumentation merged in political actions, such as the one in 2009, in which a group of socialist deputies proposed new legislation; the legislative effort failed, despite the fact that during these years a poll by research agency BVA53 showed that 75 percent of the French favored the legalization of euthanasia. Jean Leonetti

reentered the debate, stating his unequivocal resistance to the initiative to liberalize the contours of the law and to permitting any form of assisted suicide: “This would go a different way from what we did in 2005. There are different procedures that are put into play. The one procedure reveals from the ethical premise of autonomy, вЂThis is my choice,’ whereas the other procedure reveals vulnerability and states that вЂwe have to support the weakest” (FI, 18 November 2009).54 He referenced the fact that, inspired by the Leonetti Law, British legislators had approved a similar information mission.55 Similar arguments were made by experts stating that, although the Leonetti Law was not perfect, it allowed the possibility of “describing things.” His response illustrated aptly the ongoing criticism of the other side of the argument: that the law isn’t well known and is not used because it just describes situations that eventually are different from those that occur in the cases that went public in the past (e.g., interview FR 18). Another initiative to discuss the law was advanced by the senate in 2011 when three senators—Jean-Pierre Godefroy (Socialist), Alain FouchГ© (Conservative), and Guy Fischer (Communist)—suggested debating “the medicalized assistance of dying.” They did not succeed (FI, 26 January 2011) because Prime Minister FranГ§ois Fillon vehemently opposed the law and because the debate ended after the senate invalidated the proposition by omitting the first article, the key frame of the law that defined “helping to die.” Such help was said to undermine the very principle of the Hippocratic oath, as Senator Jean-Louis Lorrain revealed in his statement—as a physician and an active expert on ethical committees and advocate for more support in cancer research—in the 25 January 2011 senate debate. The debate on the 2009 proposition that opened the possibility of euthanasia led to the establishment of the National Observatory on the End of Life (Observatoire National de la Fin de Vie) that year. The observatory systematically evaluates end-of-life issues in France and examines related Page 131 →concerns presented both in the media and in expert debates. The culmination of all the arguments brought in the expert debates was that, regardless of the ethical opinion concerning end-of-life choice, the Leonetti Law was no longer seen as relevant, with the most radical critiques arguing that indeed it never was.56 The issue reappeared in the headlines in this tone during the 2012 presidential campaign between Nicolas Sarkozy and FranГ§ois Hollande. During the campaign, Hollande stated that if he were elected he would establish an expert commission to evaluate the Leonetti Law. This concern did not dominate the election campaign, but after he became president, Hollande asked Dr. Didier Sicard to establish a commission as he had promised, also examining the attitudes of the French public to the issue of self-chosen death. A well-known physician and professor, Sicard had been active in medical ethics debates since the 1980s, including the curricula of the prestigious Г‰cole Normale SupГ©rieure in the 1990s. Sicard’s public career culminated in his presidency of the French National Consultative Committee on Ethics from 1999 to 2008. He had been nominated to that position by President Jacques Chirac, so the Hollande appointment was not seen to be linked to particular political sympathies. On the contrary, Sicard’s diverse public activities made him something of the ideal person to carry out the evaluation requested by President Hollande. He made the public feel that he could break down the false distinction between those who know and those who do not. As he stated in a media interview, “I am a doctor, but I call for opening up the debate so that it is more societal and less medical” (MO, 18 July 2012).57 Sicard’s team also conducted a public poll revealing that 48 percent of the French population did not know that the Leonetti Law establishes the patient’s right to refuse treatment and that the law rejects “obsessive therapy,” or therapy that does not respect that the patient’s end of life has already begun. The poll supported the general opinion that the law is not well implemented and that the French are not aware of the patient’s free will conferred by the law. As for routine end-of-life practices, according to the report, 58 percent would like their physician to supply them with a lethal product that would enable them to end their lives themselves. The percentage was significantly higher (67 percent) for people between the ages of thirty-five and sixty-five or in the upper social classes (63 percent). The respondent’s practice of religion had no effect on her opinion (Rapport Sicard 2012, 20).

The French Association of Palliative Care held that the Sicard Report was Page 132 →neither controversial nor “partisan” (SFAP 2012). The Sicard Report reminded readers of the fact that, since 2005, no additional European countries had legalized euthanasia (Belgium, the Netherlands, and Switzerland permitted it prior to 2005) but that some nations were in fact finding inspiration in the Leonetti Law (such as Great Britain [Rapport Sicard 2012]). It also noted that a major problem seemed to be that the law was not well known by the French public. This last point was picked up in the subsequent media debate, which targeted, once again, the development of similar legislation elsewhere, especially in Belgium and Switzerland. Belgium had passed a law on active euthanasia58 in 2002, similar to the Dutch law that was often debated in the French media as an example of good practices and the slippery slope. Whereas France had been discussing not legalizing euthanasia, in Belgium the discussion led to a further liberalizing of the law. References to Belgium became particularly important in December 2013, when sixteen Belgian top pediatricians published an open letter in which they asked that the practice of euthanasia be expanded to terminally ill children. Belgian representatives of Roman Catholic, Protestant, Christian Orthodox, and Muslim groups responded to the letter with a unanimous declaration that such an extension was ethically reprehensible (Deutsche Welle 2013). The same concern over ethical reprehensibility was expressed by the European Institute of Bioethics in Brussels (IEB 2012) on behalf of the the Belgian Patient Rights Council. This discussion occurred around the same time as a citizen conference convened by the French National Consultative Committee on Ethics. The controversial aspect of the Belgian debate therefore resonated in the popular French media and accompanied the debate on the Leonetti Law as much as it was present in the regular newsletter and press releases of the leading French ethical institutions (newsletter of the French Association of Palliative Care; newsletter of the Ethical Center in Strasbourg). The interviewed experts repeatedly told me in 2013 that people who are not comfortable with the French rejection of self-chosen death could go to Belgium or Switzerland—whichever was closer to their home in France. (However, the Belgian law doesn’t apply to foreign citizens. The interviewed experts either did not know or they were referring to cases in which French citizens secured lethal products from a Belgian pharmacy by extralegal means.) Experts resorted to this strange kind of NIMBYism as their key position: even if self-chosen death is accepted, I don’t want it in my country (interviews FR 18 and FR 17). In light of these media debates, the Sicard Report (Sicard 2012) could be Page 133 →another way of triggering the well-known cleavage without widening it further, if it did not raise explicitly the issue of citizen involvement and, in particular, the citizen’s responsibility in developing a point of view on end-of-life issues. Even the report title itself, Thinking about the End of Life together, reflects the change of tone on the part of French institutions. Sicard’s team set up several methodological steps to enhance the perspective of individual responsibility: it sponsored debates in French cities where questions were asked and debated, and the team integrated these discussions into their investigation. The report included journalists who accompanied the mission to Belgium and the Netherlands. These journalists were long-term followers of the debate (e.g., the majority of articles on the end of life in Le Monde are by Laetitia Clavreul, one such journalist). The team was apparently making an effort to emphasize the institutional lack of acknowledgment of the emotional experience. For example, one woman attending the public debate in Grenoble came forward with her story after having taken care of her mother in her final days: “We think that those who are living close their eyes to the dying, but it is the other way around: the dying open the eyes of those who are living.”59 This comment was included in the final report (Sicard 2012, 9). In this same tone of solidarity, the report indicates uncertainty about how to proceed on assisted suicide. It stays within an abstract discourse of weighing the status quo and the new option, and it offers ambivalence about both sides. The report uses phrases such as “paradoxical power” or “difficulty in resolving” in order to highlight this ambivalence (Sicard 2012). It emphasizes “singularities” and “personal views” as much as it claims an understanding that some want to escape the “hypocrisy” and “uncertainty.” It nonetheless underlines this same uncertainty, not only in repeating the difficulty of arbitration but also in describing the institutional disorder in which the practice of end-of-life care is taking place. In that disorder, citizens are unaware of their options, and health-care institutions are not applying the Leonetti Law as they could, all of which creates inconsistent answers to the emotional experience surrounding the end of life.

“What strikes me is that they want to make legislation on assisted suicide based on a study of sixteen persons” (interview FR 18)60—these were the first words of a palliative care staff member in Lyon after the results of a citizens’ conference on the issue appeared in a 2013 press release. The settlement of a citizen conference organized by the National Consultative Committee on Ethics in 2013 was another initiative to involve the public in the debate in a more focused way. Sixteen citizens, representing “the diversity of the French Page 134 →population,” as the press release of the National Consultative Committee stated (CCNE 2013a), were encouraged to open the debate on assisted dying. At the same time, the forum differentiated this practice from “euthanasia” (FI, 16 December 2013; MO, 17 December 2013). If emotional experience, before the Sicard Report, had been used to emphasize one or the other position on the end of life, it was now being used to state that a clear distinction between letting die and making die is almost impossible. The reactions prompted doctors to tell personal stories that explained that this distinction needed to be handed with subtlety, and therefore end-of-life practice cannot be unified or generalized: “They [patients] do not ask anything aloud. But if you touch the top of their hand, they tell you—looking you straight in the eye—вЂI am prepared’” (MO, 4 March 2014).61 The emphasis on the absence of spoken expressions and nonverbal communication via sight strengthens the observation that—in this domain—you work with emotional experience: yours and that of your patient. You need to understand and acknowledge the emotional experience of your patient. The interviewee from the volunteer hospice organization in Lyon emphasized the subtlety necessary in handling patients (interview FR 17). Another interviewee from the hospice staff explicitly stated that end-of-life practices are both subtle and necessary: “What we do is accompaniment. Accompaniment is not suicide, it is accompaniment.” She connected this difficulty to the nature of the discussion: “You need deep reflection to settle this” (interview FR 18). The subtlety highlighted by the interviewees finally illustrates the dominant narrative in the public discussion reported in the media coverage (e.g., FI, 16. December 2013) To be or not to be prepared to assume collectively the difficulty of an individual decision: that was one area of the debate around which revolved suggestions to change the Leonetti Law, and that was the result of the debate opened by the Sicard Report. This argument is suggestive of the double-edged sword of individual responsibility when facing end-oflife care mentioned earlier regarding Chantal SГ©bire. The citizen is invited to act in an emancipated way when a decision is needed about the course of care, and necessarily when the patient himself or herself must assume some of the financial costs. The patient thereby assumes the role of an emancipated citizen who is involved in the endof-life discussion. As Sicard’s team stated in the report: “The end of life is an exclusively individual choice, and citizens do not want a law—and through this law, the state—to intervene and decide for them. To accompany this reflection with a feeling of isolationPage 135 → and other painful situations is not justifiable and is extremely violent” (Sicard 2012, 21).62 Yet the same argument about an emancipated patient is used as her possible threat. As the nonprofit Alliance pour les Droits de la Vie (Pro-Life Association) argued, “At a time when the end of life becomes more and more expensive, we could slip from a вЂright to die’ to an вЂought to die’ for economic reasons” (APDV 2013).63 We see in this argument a silent tension between the autonomy of the patient and the danger this autonomy might have for his or her dignity. Although not named explicitly during the French debate, this tension nurtured the uncertainty that became the major topic of the debate after the Sicard Report. The Sicard Report marks an important caesura in the controversy because it confirmed general unawareness about the provisions of the Leonetti Law and its weak application in health care. It drew the attention of the political establishment to the diversity of the international experience, as the report commission visited Belgium as part of its exploration. What is more, discussion about the report produced further debate on assisted suicide. It also raised on both sides of the conflict the question of how to deal with the end of life politically and who should have the authority to decide. Beyond the Sicard Report All the French political institutions and the established expert community that gave advice in the context of the Sicard Report have remained rather ambivalent on the question of a particular end-of-life choice. On one hand, they took into account the emotional content of the issue, but they could not, on the other hand, satisfy the emotional public or end the controversy. The reasons for this disparity are suggested throughout this section,

which examines how the Sicard Report echoed in the revisiting of Leonetti Law. The aim here is neither to endorse one of the groups that have become well established over this decade-long controversy in France nor to evaluate whether the new law responded adequately to the critique. The inability of the French to temper the endof-life controversy offers answers on a different level: the necessity and the impossibility of intimacy’s articulating a political solution. One aspect of addressing this difficulty was revealed through events in early 2014. The need for careful weighing of all arguments and expressions, Page 136 →including emotional experience, came to the fore, especially when the case of Vincent Lambert was making headlines. The precedent-setting events and discussions about the Sicard Report in expert circles and in the media suggest that French society was prepared to handle this issue differently. And it did. In 2013, the case of Vincent Lambert, which revealed a conflict within Lambert’s family as much as it revived public discussion on the end of life, landed in the French supreme court (Conseil d’État), which was tasked with deciding whether or not Vincent’s treatment should be ended. The involvement of the court transferred authority over end-of-life choices to the court, in essence validating the position of those who kept saying that end-of-life cases are individual and must be dealt with on an case-by-case basis. At the same time, the mere fact that the suit came before the supreme court turned the affair into something of a precedent, even though French judiciary practice is not the same as that in the United States or the Netherlands. The media used the case for emphasizing again the disparity between institutions and the individual, stating that “this sort of quadriplegic depends on the court” (MO, 29 January 2014) and describing the court’s expertise as “Solomon’s judgment” (FI, 14 February 2014). The judges underscored this representation by asserting that the case “reminds us of the extreme sensibility of our country about these issues,” as Marisol Touraine stated in Le Monde. While in the spotlight the court focused on its uncertainty about how to grapple with the issue, never mind how to resolve it. It asked for supplementary medical expertise. When the court decided on 24 June 2014 that Vincent Lambert’s medical treatment should be ended, it based its judgment on the very same Leonetti Law that had earlier been roundly criticized as useless. The court decided that Lambert’s treatment came under the law’s category of “obsessive therapy.” The same day, however, the European Court of Human Rights asked the French supreme court to stay this decision, on the basis of a petition it had received from Lambert’s parents, who charged that France was violating their son’s dignity. Such a stay can apply when the ECHR case is pending and the decision on the national level could lead to “irreparable damages,” in this case, of course, Lambert’s death. Lambert’s parents were “relieved” by the stay, but the stay returned the French public to its earlier state of uncertainty. At the same time that judges of the supreme court were taking up the case of Vincent Lambert, another regional court was sentencing Dr. Nicolas Bonnemaison for terminating the lives of seven patients. Le Monde deployed a powerful analogy to reveal the ambiguity of the issue: Page 137 → This was a strange week in the French end-of-life controversy when the French supreme court ruled that the end of treatment for Vincent Lambert is legal, without causing general protests in the matter, whereas the next day, the jury of the Court Assize PyrГ©nГ©es-Atlantiques found Dr. Bonnemaison guilty of poisoning seven elderly dying people. This brings new evidence, as already shown in the Sicard mission back in 2012, of the French fear of one day ending up in an impossible situation or suffering before dying without any help being given.64 Whereas ending Vincent Lambert’s treatment is seen as an appropriate end of his life, administration of a lethal substance after treatment was withdrawn in another case is seen as “poisoning.” More importantly, both decisions highlight the “impossible situation” that people fear, or say they fear, when end-of-life issues are debated in both intimate circles and in public discussions. This example illustrates aptly how ambiguity and uncertainty permeates the general tone of the French end-of-life debate. We can see it also in expressions that

halt any step in the one or the other direction, as demonstrated by the cautionary command in Figaro to “open the door, but not widely” (16 December 2013).65 Another way to capture the hesitation can be identified through the framing of the nonprofit Faut pas pousser (Don’t Be Pushy), which calls for a solution that is neither obsessive therapy nor euthanasia (APDV 2011). Here the emotional experience does not support one or the other but instead supports the idea that this matter is uncertain. On tourne en ronde is the common French expression for saying that you are in a deadlock, going back and forth without necessarily making progress or approaching a solution. This expression has been used by some experts in reference to post-Lambert events, in which the main achievements appeared to be steering the debate on both sides and making the expertise more sophisticated—through the establishment of observatory work or through a consultative network for particular end-of-life cases. One of them was the continuation of the legal case of Dr. Bonnemaison, which began in 2014. The case was appealed and was covered by the French media until 2015. Dr. Bonnemaison was sentenced to two years in prison, and his personality created a symbolic figure similar to Dr. Tramois and Dr. Chaussoy. In that sense, while his case sparked discussion of the legitimacy of self-chosen death, it did not challenge the known lines of conflict.66 Emerging from this deadlocked but loquacious atmosphere, the 2016 Page 138 →Clayes-Leonetti Law (No. 2016-87, 2 February 2016) should have been another occasion to end the end-of-life controversy in France. Two parliamentarians—one from the Left, and one from the Right, both with medical expertise—Alain Clayes and Jean Leonetti, presented their collaboration as a consensus of the French society through the passage of the law. They framed it as a response to the Sicard Report, as was noted by other parliamentarians during debate over the law (Report 2016). Their colleagues complimented the two men as “constructive” and “cooperative” (MO, 20 January 2016). The import of the discussion was that the new legislation improved the Leonetti Law without “diverting its spirit” (MO, 15 June 2016; FI, 20 October 2015; MO, 27 January 2016). This note about the diversion of the spirit was critical. By the time the Sicard Report made the headlines, the idea of thinking about the legal framing of self-chosen death was no longer rooted in the civic sector but had expanded to include parliamentarians. It was clear that a unanimous vote was no longer possible. Therefore, the image of a consensus that took into account the precedent law, was important in calming those who feared a slippery slope, particularly the medical authorities and professional associations. But the new law did not quite achieve this, as many argued that allowing terminal sedation went too far. Some parliamentarians did not vote for the law because “it opens the door toward self-chosen death” (MO, 17 March 2015, 27 January 2016). The law thus attempted to assuage those who believed that patients were not important in the Leonetti Law. “The patient is in the middle of this law,” emphasized Health Minister Marisol Touraine, referring to the possibility of terminal sedation in some cases, and to the binding character of living wills. However, the ADMD held the opposite opinion, as did the web platform La Triste RГ©alitГ© sur La Fin de Vie, which emphasized that the law was just “confirming the status quo.” The Clayes-Leonetti Law represents through these disparate reactions the general atmosphere that persists in France. Indeed, it might lead to future legislation on some form of euthanasia. That, however, is not the focus of the present analysis. What the 2003–2016 developments in the French end-of-life controversy point to is how different the media coverage might be and how diverse the opinions of political figures for and against legalizing euthanasia might become if only all the actors could agree on two things: that the debate continues, and that it continues in its ultimate and irreconcilable tone. Page 139 →

Conclusion The French debate shows us very well its dual face: Being a political matter, a matter of organization, the end of life escapes this organization because it is an intimate issue. This dual face—in fact a leakiness—has become the everyday dilemma in the practice of the publicly organized end-of-life care and of the private health-care

centers because they rarely exhibit the communication skills and coaching needed when dealing with the emotions of patients and their loved ones.67 In fact, however, expressions of emotions—such as anxieties, fears, hopes, and joys—need to be seen as an intrinsic part of the daily practices of medical professionals and the patients. It is then interesting to see that the French political establishment did not put this emotional experience with the end of life into play either during the information mission preceding the Leonetti Law or during the legislative debate on it in 2005. It did not integrate the opposed actors into the debate around the law more explicitly, and, in particular, it did not display the emotionality within the arguments of these opposed actors in the media or in other forms of communication with the public (such as press releases). The arguments taking the emotional experience into account are viewed as “understandable” and “logical” by the French public and are more likely to enhance public acceptance. On the part of policymakers, there first seemed to be no place for exceptions. Despite the fact that the same argument about one’s free use of one’s body that emerged in the abortion debate challenged the debate on the end of life (in strong tension with the sacred and vulnerable character of life), this tension was outweighed by classical ethical arguments. But then, by 2012, the initiative to reopen the debate and to seize it in the citizen forum did not achieve the expected result of calming the controversy. As we have seen in the analysis of events, the debate did not change the tone of the argument between 2012 and 2016. Rather, palliative care professionals expressed their fear of legalizing assisted suicide in the same manner that nonprofits, advocacy groups, and media coverage had done when the Leonetti Law was debated. Palliative care professionals stated that this is not the way “one speaks about such things” (interview FR 17), expressing their inquietude in newsletters for ethical professional networks and palliative care associations. This was consistent with the discourses of expert circles around the production and the evaluation of the Sicard Report, which highlighted the difficulty of the matter (MO, 25 February 2014; FI, 25 FebruaryPage 140 → 2014), and which ended up in an almost too sophisticated differentiation of terms. The strict distinction between “helping to die,” “accompany someone who is dying,” and “hasten someone’s death” is the most prominent example of this sophistication. The tension in the conflict has appeared to be something other than the common (moral) articulation of secular liberalism calling for an extension of individual freedom to the person desiring his or her own death, in interaction with the persistence of a conservatism that denies such an extension and warns against all sorts of slippery slopes that would ensue.68 On both sides, the arguments drew on experiences in other countries to support and legitimize their position. The analysis reveals that the requirement for intimacy has been used on both sides of the argument, indeed virtually every time one of the parties became the one whose arguments were heard by the establishment. Intimacy therefore plays an important role in both the Leonetti Law and in the attempt to calm the controversy aroused by it. One of the prominent promises of the liberal democratic policy regime has been that institutions should function in an enlightened way, that is, based on ample evidence. In the end-of-life controversy, this implies that institutions listen to and heed citizens and the civil sphere, and enter into dialogue with protest groups. However, fulfilling this challenge is in the French case concretized in the call for acknowledgment of emotional experience at the end of life. The analysis thus contributes to lessening a conflict that concerns intimacy regardless of the nature of the proposition. Protest groups repeatedly claimed that established institutional actors were not sufficiently acknowledging their emotional experiences—this began to change with the 2012 Sicard Report. As the discussion shifted and the protest groups secured a place and a voice in the discussion and achieved a partial compromise through the possibility of the terminal sedation through the Clayes-Leonetti Law 2016, one would expect that such an acknowledgment of emotional experience might be possible. However, some of the activists’ groups claimed that the law did not go far enough, whereas others criticized it for going too far. Both sides used intimacy as the basis of their argument. Although the evoked development of French policymaking on the end of life might be seen as embodying a conflict between two arguments (for and against legalizing self-chosen death), this very opposition reveals a conflict over the nature of political institution. The French political establishment attempted to end the controversy by taming the emotional experience raised by the mediatized cases. It tried also to enact a collective decision, as

Page 141 →with the unanimous vote and with the Sicard Report. As the conflict developed, French political institutions exposed themselves to a tug-of-war of meanings, revealing their understanding of the general principles of what is in their competency and what is not. But they are not the sole ones. The civil sphere, in particular the media, has also triggered the debate, and argue for the acknowledgment of emotional experience rather than depend on ethical arguments. In light of the developments of the media reception and the public polls, it is striking that the French state acted between 2003 and 2008 as if it would like to oppose this initiative to redefine itself, as if it would aim to oppose, precisely in the name of preserving the good and the right, emotional experience with death and dying. Whereas the acknowledgment of emotional experience with the end of life was seen as crucial for the understanding of what the end of life is about and became a vector of separation of both groups—particularly in the events prior to the 2008 Chantal SГ©bire case—the difficulty of embracing that same acknowledgment became visible between 2012 and 2016. Sicard’s strategy, to go beyond the paternalistic discourse by embracing the patient’s voice within the 2013 citizen forum, did not create an ambiance of acceptance of state policies, and the 2016 revised law did not improve the acceptance either, despite its emphasis on consensus. Rather, the events beyond the Sicard Report have deepened the controversy and denuded the controversial core of the conflict so that it lay not in the question of euthanasia or assisted suicide itself but in the relation of the individual to the state and vice versa. The same need for acknowledgment exposed the impossibility of finding closure to the controversy, as any initiative in one or the other direction was criticized by some group as indicating that the actor was unaware of the stakes. This unclear, and almost paradoxical, relation finally brings forward the role of the politics of intimacy in the endof-life controversy. The individual character of the emotional experience with the end of life, the very trigger of the political debate at the beginning, becomes its own deadlock and represents the very core of the controversy. Not the ethical argument about dignity and autonomy but the argument about individual empowerment is the crucial point that remains unsolvable: to seize collectively the border between letting die and making live, so that the individual feels an acknowledgment of her emotional experience, is both desirable and impossible.

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Chapter 5 The Czech End-of-Life Care Policy Accommodating Intimacy in Institutions, 2001–2016 In the name of civilization—as we label it—we have driven death from our lives. It should take place somewhere under the hygienic conditions of a hospital. When someone older wants to talk seriously about death, most of younger people give him the brush-off: вЂForget about it—you’re going to be here until you’re a hundred years old.’ Instead of talking about things that older ones have on their mind and about which they want to start talking, the others shut them up with banalities. (Smrt jsme tzv. civilizovanД› vytД›snili ze svГЅch ЕѕivotЕЇ. MГЎ probД›hnout nД›kde v nemocniДЌnГ-ch hygienickГЅch podmГ-nkГЎch. KdyЕѕ chce nД›kdo starГЅ o smrti vГЎЕѕnД› mluvit, vД›tЕЎinou ho mladЕЎГodbudou mГЎvnutГ-m ruky: Dej pokoj, ty tady budeЕЎ do sta. MГ-sto rozhovoru o vД›cech, kterГ© se mu honГhlavou a o kterГЅch se potЕ™ebuje starГЅ ДЌlovД›k nД›jak rozpovГ-dat, zalepГ- se mu pusa takovou banalitou.) —(Е iklovГЎ 2013) Investigating end-of-life policies in the Czech Republic is like exploring a terra incognita. This is so because the end of life has long lacked a prominent place in either the health-care sector or policy debate. However, this chapter dives right into the terra incognita of the end of life, because it is the main objective of the activities of the Czech nonprofit Homecoming. There are several reasons to focus primarily on Homecoming. Its story of turning political attention toward end-of-life care leads us to examine how, in the Czech debate, intimacy serves as an orientation in the cultural and sociopolitical amalgam of end of life and how it becomes the arena of articulation of ethical concerns related to the end of life. Page 144 →In the Czech debate between 2001 and 2016, while the end of life was increasingly framed in the media and in the expert debates as a “need for intimacy,” it is precisely this intimate character that makes the institutional embedding of the end of life highly problematic. The issue was taken up by various stakeholders as a political one, and I follow what this tells us about the relationship between individual and political institutions. The analysis focuses primarily on how Homecoming deployed its institutional agenda between 2001 and 2007 by domesticating knowledge on intimacy at the end of life and by aiming at a specific and concrete legal framework for end-of-life care. I explain the domestication by relying on Homecoming’s activities and on an investigation of the everyday experience with the end of life as experienced by mourners in the interviews I conducted. While the analysis shows that these people want and need a psychosocial frame for end-of-life care, this frame became problematic in the political debate, especially after 2007. Although Homecoming’s activities have to a large extent filled the legal gap mentioned above by offering advisory services, and by developing a network for the palliative expert community, its agenda seems deeply rooted in a protest scene opposed to state institutions, which has its roots in a larger context of the postcommunist repugnance against arrangements organized by state structures. To show that Homecoming’s strategy is not linked to the particularity of the mobile hospice or the sort of end-of-life choice the nonprofit supports and fights for, the analysis also takes into account debates on selfchosen death, on which Homecoming assumed a public position from 2007 onward. Such debates were mainly engaged in by the advocacy group Eutanazie–DobrГЎ Smrt (Euthanasia–Good Death, EDS, which advocated in 2007 and again in 2015 for laws on assisted suicide (Death with Dignity Law), and in the media coverage generated by EDS since 2007. The analysis leads to the initial question of the role of intimacy in the end-of-life controversy as a device that both formulates arguments related to the end of life and renders them unsolvable. We observe in the argumentations of

both camps that dignity and autonomy are sustained with intimacy as universal human values, but also that intimacy’s role uncovers the problematic relationship between the individual and the institution. Regardless of whether the actors of the debate speak about “good dying” in terms of palliative care or in terms of selfchosen death, they anchor it in the role of the acknowledgment of the emotional experience of the end of life, and both medical and political institutions seem to fail to identify that acknowledgment.Page 145 → The way this acknowledgment is depicted by both Homecoming and EDS then raises the question of whether the conflict between the individual and the institution can be solved. The development and dynamic of the Czech debate has been apprehended through an extensive analysis of multiple sources. I began the qualitative interviews in August 2007 and proceeded in early spring 2008 to the inquiry of mourners. After completing interviews with mourners, with the care staff in LDN units, and in hospices during March and July 2009, I reexamined the data in the context of Homecoming activities between 2001 and 2007. I have analyzed Homecomings’ online forum, where people exchanged posts about their experiences with dying. I also referred to notes from expert courses and colloquiums that I attended between 2005 and 2009. I have used information from the two websites on the issue—Homecoming’s Umirani.cz (umГ-rГЎnГ-means “dying”) and the website of Euthanasia–Good Death (eutanazie-dobrasmrt.bluefile.cz). I then collected information from the Homecoming newsletter up to early 2016; these newsletters were not a primary object of my analysis, but they contributed to the general embedding of the issues at stake. The twelve interviews with “mourners” showed whether and how the “need for intimacy” that Homecoming emphasizes is perceived and performed in everyday practices. The inquiry with mourners represented the complexity of solutions that are being proposed for families treating persons at the end of life: six respondents experienced the “dying” of the person at home, two at hospice centers, and four at long-term care centers (LDNs) that developed the institutionalized practice of the caregiving services offered by state. LDNs present a conflicting field for dying people, because dying patients are not long-term ill; rather, they are dying, which means that their needs and assessment of them might be quite different from those of patients who may live with their illness for a long time. At the same time, not fitting in this care concept implied that everything can or even must be negotiated with the care personnel and the family. The differences between the situations that the relatives were confronted with necessitated my diversifying the image of “good dying,” as a constellation of what is “good” for “whom,” “where,” and “why.” Only two respondents were male. The prevalence of female respondents is explicable, first, by the lower employment rate and lower pay rate of women in the Czech Republic. Recent data prove the prevalence of females in the practice of care (half of the economically inactive female populationPage 146 → is motivated by family reasons that include care for the children and for other family members).1 Additionally, the average life expectancy for women is six years greater than that for men (Czech Statistical Office 2007), which means that female spouses are often those who are providing care because the husband tends to die first. Second, one respondent claimed to be interested in doing the interview, but he canceled because there was “no time” and because “everything was already too demanding and exhausting, and to talk about all this? No thanks.”2 The two male respondents who remained in my inquiry stated that it was difficult for them to think about dying: “All these emotions when I was at the bedsideВ .В .В . I couldn’t think about what is or what could be different. I just avoided that” (interview CZ 25). We enter here a certain communication stereotype that might expect male respondents to suppress talk about the end of life, which returns us to the issue of the evacuation of emotional experience from both public life and politics. Concerning the age of respondents, I distinguished people who did not have families on their own, those who were mobile and experienced their mobility through work, and other lifestyle choices. Interviews CZ 6, CZ 9, CZ 14, and CZ 25 render this social context visible (the age group is twenty to thirty-three years). Further, I distinguished those who were not yet approaching retirement and did not feel worried about losing their jobs, or did not have health complications of their own). The ages of these two respondents were thirty-three and forty-five (interviews CZ 15 and CZ 24). Then I distinguished a group who were approximately three to five years (between the ages of fifty-two and sixty-two) from retirement or who had just retired (interviews CZ 16, CZ 17, CZ 18, CZ 21, and CZ 26). Not only did respondents verbalize their lifestyle choices in response to their job differently, but they also

verbalized the dying process as something more clearly relevant to them than did the other two age groups. The reason for this partition, however, was not to draw any conclusions on the correlation of age and the way people took care of others. The age of the respondents was more an explanatory vector of their lifestyles that furnished the necessary context for the interpretation of their respective stories.3 I determined the context of mourners’ narratives through analysis of media coverage on “dying,” “death,” and “end-of-life care,” as well as all comments on “assisted suicide” or “euthanasia” in the Czech daily press and television over a fifteen-year period (between 2001 and 2016). At the same time, I followed the expert discourse after 2007 through press releases of the MinistryPage 147 → of Health Care and the Czech Palliative Association, and interviews with health experts. I integrated the 2008 debate on co-pays, which represents the larger context of the discussion about patient autonomy in the Czech Republic. I also interviewed people from the Czech Palliative Association and bioethical experts associated with both Homecoming and the general Czech debate. I also interviewed people involved in Euthanasia–Good Death, analyzed that organization’s information campaign and its law propositions (from 2007 and 2015), and followed its activities as reported on its website and in its Facebook group up to 2016. I start discussion of the Czech case by explaining the postcommunist background of the country, which affected how the actors entered the controversy and how inquired mourners formulated their concerns. This background explains a larger context for the Czech people: everything that is regulated—and especially that which is regulated collectively—has acquired a negative connotation. The analysis of the 2001–2007 period explains that Homecoming has—despite its remarkable achievements in gathering experts to its side—failed to accomplish the desired legislation precisely because the collective domestication of the intimacy of dying clashes with the very idea of intimacy. However, the domestication is not limited to Homecoming’s particular vision of the end of life, as I describe through analysis of its most prominent opponent, Euthanasia–Good Death, which came on the scene in 2007. EDS also has domesticated knowledge on intimacy that it deploys as a tool of argumentation and as a tool of policy formulation, and it has faced the same concern that reveals to us the problematic boundary between the individual and the collective.

Escaping the Communist Heritage: The Background of the Czech End-of-Life Debate “Being anticommunist is just normal, isn’t it?”4 This observation, published in summer 2009 in an editorial in one of the most widely read Czech weeklies, captures the main political narrative in Czech society twenty-five years after the fall of communist ideology, or of “socialism,” as the regime between 1948 and 1989 is described by Czechs. Labeling anticommunism as an often decisive cornerstone of policy discussions after 1989 and a framework for public discussion on any possible topic has become almost a stereotype in public debates. The health-care sector, in particular, often becomes embroiledPage 148 → in this stereotype, as policy formulations in this field run the risk of being accused of “social engineering.” The term “anticommunist” started to be used as an label in political debates right after 1989, when being anticommunist meant being a revolutionary against the Communist regime, and it has become, little by little, an integral part of the narrative of being modern or normal during the postcommunist transformation. If we examine current Czech media discourse, anticommunism has become a discursive practice through which, on the one hand, it has been possible to denounce all crimes and antidemocratic measures that the 1948–1989 regime practiced (BД›lohradskГЅ 2008, 2009; CГ-saЕ™ and VrГЎblГ-kovГЎ 2010; and SlaДЌГЎlek 2014). On the other hand, it has accumulated an ideological amalgam, borrowing diverse suggestions from different policies in other European countries, that intends to be “liberal,” “prosperous,” and “free” from the state (some authors speak about “depoliticized reason”: BarЕЎa 2009). As revealed by debates in the media, the anticommunist paradigm—if we frame it as a paradigm, as do its explicit advocates—borrows narratives from both the left liberal movement and neoliberal ideology.5 While the context of anticommunism6 strengthens in the Czech debate on the end of life the will to redesign the status quo, it also renders it difficult to plan policies on paternalistic foundations because these policies could be accused of “social engineering” or of a “return to socialism.” In that perspective, the

“anticommunism” exceeds the ideological dimension and affects the framing of an issue into politics. First, it shows the transformative character of Czech political practice that assesses respective policies according to their opposition to the “old regime” (as the 1948–1989 period is often called in public discussions) and their resemblance with the Wes” (which to Czechs means Western Europe and therefore implicitly also modern Western civilization). Related to that, “anticommunism” additionally explains why some actors in the field are intertwined because of their antipathy toward the past, although they would not perhaps interact under different conditions because their view on the role of the state, and specifically the role of dealing with the social aspects of care, differ. By prioritizing progress and modernity, anticommunism supports innovation, but simultaneously creates fear and anxiety about institutional actions that are connected to the implementation of such innovations. So the narrative often goes thus: let people find their way, or let the market find its way. There is also a tendency to disregard the state and instead to prioritize private organizations and nonprofits that Page 149 →do not act on behalf of the state and are thus perceived more positively by the public. This tendency combines with the mistrust that these nonprofits themselves have toward the state and that contributes to their image as being the good side of the debate, whereas the state is the bad side. To this context relates the general skepticism toward public engagement in the institutionalization of practices due to the country’s postcommunist history (see CГ-saЕ™ and VrГЎblГ-kovГЎ 2010; DurnovГЎ 2013; and Roberts 2009). In particular, the relationship between local elites and their challengers has become a crucial nexus in the postcommunist era of Czech policymaking. Public acknowledgment and participation still lag because of the rigidity of Czech institutional structures (MansfeldovГЎ and Kroupa 2005).7 Although some public issues have raised political controversies (e.g., the proposed installation of U.S. radar, and the proposition of the EU migrant quotas), active participation in public debates is generally low in the country.8 As for the topic of health care, the most prominent media-nurtured debate is the issue of co-pays (“regulation fees”) for any visit to a family doctor, despite the fact that social security coverage is mandatory for every Czech citizen. It follows that the debate around the end of life is intrinsically linked to the debate on the reconstruction of healthcare institutions after 1989. The fall of the “old regime” has raised a general question about redefining political practices,9 and two narratives have been crossing each other in the vast and ongoing debate about the health-care system:10 the narrative of paternalistic institutions inspecting and surveying the public health, suggesting reform through a top-down perspective, and the narrative of self-governing techniques that would motivate the patient from a bottom-up perspective, distinct from “rigid” institutional settings, as these are often labeled in the debate. We therefore observe nonprofits in the debate “that view the state as the enemy” (interview CZ 13), as well as those who think that the “political character is incompatible with their philanthropic visions” (interview CZ 5).11 Additionally, the will to give more autonomy to the patient and make him or her actively search for and apply information is combined with the lack of any organizational setting that would help the patient become informed so that she can exercise this autonomy. Although some palliative experts state that this might be a generational issue and that, slowly, the paternalistic model of care will change to a model in which doctor and patient are partners (interview CZ 5), one can observe a contrast arising from this switch between “autonomy” and a fear of “loss of dignity” that implies that patients Page 150 →might not be so secure once they can no longer help themselves. This uneasy institutional background goes hand in hand with a secularist culture in the Czech Republic that strengthens the call for revision by highlighting the premise of a modern Western civilization: that end-of-life issues are a matter of autonomy and dignity. Since World War II, the self-professed religiosity of the Czech population has declined, and in the most recent national census, only about 30 percent of Czechs declare themselves religious (Czech Statistical Office 2011),12 whereas the remaining 70 percent claim not to practice any religion. Several sociological analyses (e.g., NeЕЎporovГЎ 2007) explain the absence of spiritual and religious practices by forty years of Communist government, which has, among other things, purged the practice of religion from Czech public life. Nonetheless, recent data on lifestyle choices suggest that secularization is supported by the current trend toward economization of intimacy on several levels. More than a third (34 percent)13 of the Czech population prioritizes career over home and personal matters. Moreover, a high number of people forgo funeral

ceremonies for family members (almost 60 percent, LN, 16 November 2007; Е iklovГЎ 2013), instead simply interring the remains without a grief ritual. The more secular the debate on dying is, the greater become both the necessity of redesigning the ethical and cultural values and the presentation of these values as universal, with a supranational validity. The disparity between the individual and some institutional anchoring was a mark of the deadlocked dynamic of the Czech end-of-life debate between 2001 and 2016. The deadlock resulted directly from the conviction that negotiating public affairs would go better without these evil institutions—tainted with the Communist past and too technocratic in spirit. All participants state their need to act based on the impact on “home” and through references to the international debate, thereby showing that—indeed—this home can be as good as those in the “West.” I explain in the next section how these aspects have framed the milestones of the end-of-life care in the observed period and structured the debate’s actors in their quest for an acceptable place for death. Laying End-of-Life Issues on the Political Table The Czech health-care sector has been one of the most controversial policy sectors in the postcommunist history of the state, because it has been explicitly related to debates on the role of institutions and on the structure and Page 151 →organization of medical staff, who before 1989 were subject to specific territorial planning and financed entirely by the state. The fact that there have been seventeen ministers of health in the six election periods of the Czech Republic in the twenty-three years between 1989 and 2016 sheds light on the complexity of this sector. Four ministers resigned after having tried (and failed) to put through reforms.14 The frequent turnover of ministerial staff has stymied not only productive debate on long-term conceptions within specific fields of health care, but also made difficult any networking in the formulation of an agenda by diverse advocate groups. Before 1989, the health-care sector was largely coordinated by the state. Public health fell under the auspices of the Communal Offices for National Health (OГљNZ), which coordinated general practitioners, organized school physicians, and fulfilled (and enforced) both vaccination programs prevention programs. What is more, the Communist regime advanced an extended institutional embedding of social services by the state, beginning with preschools and extending to institutions for disabled children, the mentally ill, and the physically disabled (Czech Statistical Office 1999). For the elderly, retirement homes were the main pillars of care. The widely adopted practice of in-patient care has produced a social environment in which, for instance, placing a disabled child into institutional care was perceived to be more or less common sense (interview CZ 26). The current practice of in-patient care for those who are dying must be seen within that organizational tradition. On the one hand, this practice has supplied the debate with a notion of a state that can dispel inconveniences from citizens’ living rooms. For many experts in end-of-life care, this has resulted in a particular understanding of problems related to dying as problems of institutional architecture. On the other hand, this practice has created among many the will to be self-reliant and to be freed from institutional bindings. This call for the central position of the individual was reflected in the larger narrative of the development of health care in the Czech Republic. It can be exemplified through the reform on co-pays. A need for reform in the health-care sector has been stated as often as it has been rendered difficult through the complexity of the postcommunist transformation. Finding alternatives to the old organization mediated between the anticommunism narrative that called for complete abandonment of the old structures and the financial imperative that justified reorientation to the rise of economic production and the individual capacity to produce, rather than to development of institutional social services (as show, e.g., Page 152 →Keller 1992 and CГ-saЕ™ 2017). Simultaneously, a fear of ensuing chaos and an unwillingness to change the “old” practices in everyday rituals of health care added to the difficulties of restructuring the sector (interview CZ 22). The main point of reference in the end-of-life debate is the 2006 Social Services Law, a major framework for health-care providers in which care for terminally ill patients was embedded. It is noteworthy that the Czech stakeholders included care for the terminally ill specifically on the basis of the recommendation of the Council of Europe, adopted at the 860th Assembly of the ministry representatives of member countries. Specific end-of-life

care was mentioned for the first time,15 although only as a facet of emergency care. That categorization led to a situation in end-of-life day-to-day practices in which the patient support network was often excluded when the medical staff developed a patient care plan. What’s more, as some practitioners told me during our interviews, awareness about what this type of care entails, or could entail, remained opaque (interviews CZ 2, CZ 3, and CZ 5). This situation hindered establishing a setting that takes into account the specific needs of the dying and that makes those needs an issue in a larger public policy frame. This debate nevertheless faded, nudged out because the difficult situation in the overall health-care sector has encumbered the visualization, let alone the accomplishment, of long-term goals. Minister of Health Care TomГЎЕЎ JulГ-nek’s efforts to institute a complex reform of the Czech health-care system in 2008 can be thus understood as a courageous—almost revolutionary—step in light of the obstacles facing the sector. This reform, which was approved by the Czech parliament in January 2008, was supposed to be the most fundamental and far-reaching restructuring of the health care system in the novel period of the country. The reform has become central in the Czech public debate on care and became the reference point for later narratives concerning care. JulГ-nek’s reforms began with the introduction of co-pays (regulation fee), a form of self-participation of a patient payable at each visit to health-care establishments. Before entering the office of a family doctor or a specialist, a patient accesses an ATM-type machine in the corridor to retrieve the exact amount due at the doctor’s office. After paying, the patient can be treated or consult with the doctor. The co-pay is the same every time for all patients, regardless of whether or how much they contribute to the social security system through their workplace, and regardless of how many doctor visits they have each year. Due to the controversy that arose from implementation of this practice, Page 153 →implementation of the rest of the reform was abandoned. But the fee remained. It makes the regular social security payment—obligatory for every citizen and due every month regardless of whether or not you see a doctor—problematic because, according to the Czech constitution, the social security system guarantees free access to health-care services. One side of the political debate rejected the fees, claiming they meant the “loss of dignity” for patients (HolmerovГЎ 2008a, 2008c) and pointing out that supplementary fees might discourage people from consulting physicians, thereby hindering disease prevention; this side brought a complaint before the Constitutional Court. The other side of the public, however, was pleased by the new co-pay because it envisioned that the fee would discourage “those old people who come to the doctor only to talk and complain all the time” (MF, 23 February 2008; Czech Parliament 2008) from making unnecessary visits to their primary-care physicians, who presumably then would have more time to deal with “real problems” (MF, 4 January 2008; BД›geЕ™ovГЎ 2013).16 In spring 2008, the Czech Constitutional Court determined that the fee was not contradictory to the constitutional principle of “free health care.” Nevertheless, information leaked out that the decision was not unanimous, and when a dissent opinion of the judges was published it brought the discourse right back to the starting point of the political discussion, that is, whether or not such a practice should be maintained. The practice of the co-pay was modified in autumn 2009 to make medical visits by children and the chronically ill free of charge. Subsequently, TomГЎЕЎ JulГ-nek, the minister of health care—as already common in the history of the Czech health-care sector—was defeated in the senate elections and had to resign his cabinet post. The co-pay reform created an important context that helps us to understand the link between patients’ autonomy and dignity and the “price of health,” which has been both highly relevant and highly disputable in the context of end-of-life care. The financial argument became powerful during the 1990s, as the general goal of policies was to achieve the living standard of Western Europe. Raising state income has been given priority over other policy issues, such as health care or education. Although this trend was not incomprehensible, and we know this prioritization from many policy discussions around the world, its shape and its extent are noteworthy. The Czech health-care debate has been in fact restricted to the financial profitability of the system as a whole. Other efforts were put into restructuringPage 154 → health-care insurance (Czech Statistical Office 2007), and although it was logical that the system of health-care coverage had to be adapted to the new political system, the

failure to deal with the related social questions is apparent and in fact resulted in a number of nonprofit activities, such as the one we follow here in the end-of-life sector. The financial issues have remained the top priorities of the health-care ministry for the past four electoral cycles,17 where the debate has focused on money. This creates another reason to depict an end-of-life policy as an extravagance—why expend time and resources trying to solve a problem of emotions when the most pressing issue is how to finance physical care itself? In the 2009 national inquiry about the quality of health-care services, the expert prognosis of the Ministry of Health Care attended to the fact that almost 80 percent of the respondents had encountered problems with the quality of care (small, large, or catastrophic problems). At the same time, a relatively high number (34 percent) felt neither satisfied nor dissatisfied with the state of health care in the Czech Republic. Patients felt that the medical staff treated them with some degree of indifference (nezГЎjem): between 60 percent and 70 percent of respondents were unhappy with the way nurses and doctors communicated with them. These numbers have not changed significantly, as reported at the roundtable on the future of health care in the Czech Republic organized by the ministry in 2011.18 Among the problems identified during my own interviews is a lack of a protocol for who communicates with the patient and how. Although this argument became somewhat commonplace in the debate, it has not resulted in any changes to the laws governing health care. Against the “need” of financial resources, the emotional need for suitable end-of-life care is seen mainly as a luxury whose time has not yet come.19 The financial argument overshadows and is reflected in the everyday medical care practice (interview CZ 1), and it now affects the social cartography of those who receive the care and those who provide it. Czech hospitals call for more funds to pay their doctors and nurses (interview CZ 1). Medical doctors and nurses themselves feel keenly that the lack of financial resources influences their everyday practice (interviews CZ 1, CZ 2, and CZ 22). What is more, the financial argument has an impact on the promotion of palliative care in the Czech Republic and on raising awareness about dying because, in the absence of a legal framework, palliative care must be covered by private resources (interviews CZ 8 and CZ 1). Since the financial argument was often used to explain why some legislationPage 155 → was still pending, creating in the public a sort of resignation to the status quo, it reinforced cleavage between the individual wishing the appropriate form of care and the “evil” institution, so to speak, that does not deal with it. Nonprofits built their arguments on this separation and consequently argued for end-of-life policy through comparison with other countries. This international dimension is a strong narrative that supported any initiative to put an issue on the negotiation table between 2007 and 2016. For Homecoming, examples from other states is empirical evidence that the “need” for care is a legitimate one. EDS also uses international discourse to advance its own argument. Both reclaim, through the international discourse, inclusion in “modern, Western, civilized” society, which should have either a clear legal frame for integrating palliative care into health-care services (Homecoming) or legislation on self-chosen death (EDS). This look outside the nation’s borders reinforces the reclaimed need for a policy as a need that is desirable not only for Czech citizens but for all citizens in the Western world. Both initiatives then turn away from the Czech institutions, blame them, but they still need these institutions in order to get the acknowledgment they seek in the matter.

Homecoming and Other Actors in the Quest for an Acceptable Place to Die “вЂI want to go homeВ .В .В . I want to go to our farm’—that is what she said to me frequently on those days.” These were the words of a mourner speaking to me about her elderly mother, who she had been taking care of during the last three years of her life (interview CZ 18). “Home” represents a stable point here, visualizing the common sense of “good dying” in modern Western societies. The need for communication, acknowledgment, and careful listening to the wishes of dying ones is a crucial point of attachment of dying people, as we see in Homecoming’s conception of the debate.20 Other actors, among them Euthanasia–Good Death, also refer to the acceptable place for dying as a specific inhabitancy of intimate needs of the patient. But how this should be done in the Czech context remained unclear and a point of contestation. As the Czech Society of Palliative Medicine (CSPM) repeatedly reminded readers through its newsletter, there is no consensus

among policymakers and professionals on what form of palliative care patients need, how it should be organized, or who should provide it (e.g., CSPM Page 156 →2013). This question has brought forward a number of monitoring activities that are debated regularly on the basis of international contexts. The monitoring continues to be carried out by singular experts or expert bodies that lack a systematic link to a nationwide institutional structure. The fragmentary communication among other nonprofits and among experts has been raised several times, along with the unstable character of the Ministry of Health Care (interviews CZ 1, CZ 8, and CZ 9), as the reason consensus remains difficult to achieve. These expert discussions that essentially revolve around the question of what is an acceptable place for death can be seen in two ways. First, they are a reaction to the lack of specific palliative care units in the Czech health-care system. Second, they are a metaphor for how to organize the professional assessment of dying in such a way as to ensure both the autonomy and the dignity of the individual, as well as a metaphor for how these values should be reflected in the respective responsibilities of care institutions and the individuals these institutions care for. This discussion refers not to a concrete, physical place but uses “home” as an abstract category that encompasses emotional needs and imaginations and requirements. Endangered by demographic changes, this common understanding of home needs to be reestablished in some way. Home becomes a moral paradigm of a practice of dying that has been “abandoned” (interview CZ 9) and that needs to be brought “back home” (interview CZ 8). As in other European countries, in the Czech Republic the most common place for someone to die is in a hospital (70 percent). According to recent figures from Czech health-care institutions, between eleven thousand and sixteen thousand patients a year need special palliative care (SlГЎma 2012). Nine percent of deaths occur in socalled long-term care settings (LDN). Around 20 percent of deaths occur in a residence, and these are usually sudden and unexpected. According to CSPM estimates, only about 5 to 10 percent of deaths in the home environment are expected and supported by end-of-life-care services (UZIS 2012).21 LDN units dominate the institutional setting and represent the most common place to die for Czech citizens while also representing the least desirable, even “most horrible,” place for many (interviews CZ 1, CZ 2, CZ 6, CZ 13). LDN staff themselves criticize the units as being the final stop, and along with the relatives of patients represent a heterogeneous group of actors that influence the discussion on the end of life by declaring the incompatibility of these services with what dying is—or should be (interviews CZ 1, CZ 4, Page 157 →and CZ 22). Dying patients do not really “fit” into the LDN concept (interview CZ 2): they are not persons who are merely ill in the long term. The needs of people who are dying and the assessment of these needs might be very different from those of patients who are ill over the long term, because their illnesses might be very short. This brings important actors into the debate, who directly observe and live through the whole process: the mourners. The mourners stand at the boundary between the dying patient and the surrounding collective, and they also connect this experience to the action of political institutions because mourners constantly weigh their experience against what might be possible in a different family situation, in a different legislative situation, and, sometimes, in a different country. The people I spoke with judge and comment on their experience, describing home as an abstract and emotional category that is not necessarily bound to the physical presence of the loved ones in their living rooms but is thought of as the acknowledgment of the emotional experience of the dying and with dying by the institutions that regulate the end of life or affect its regulation. Since citizens have in recent decades become more mobile, commuting to work or their studies, and since familial networks do not operate in the same symmetrical disposition of the elderly and the young, home has to be replaced or reconceived. Although the state of the art improved after about 2011 because more hospital beds were assigned to palliative care, and although the number of seminars for medical staff organized by universities, the number of media articles, and the general debate on the topic all increased, the family of the dying one may nonetheless still perceive an impediment to a “good death.” As some respondents among medical staff outside of the Homecoming network told me, LDN units, health-care centers, and primary-care offices have neither the space nor the time to accommodate patients’ individual wishes for conversations about the attitudes of patients or for emotional acknowledgment of the needs of the patient. For example, the doctor in interview CZ 1 explained to

me that his part-time work in the LDN is sometimes viewed as a hassle by the nurses because they have to maintain communication with and between both of the doctors who are in the LDN. This situation suggests one more reason to reconsider the lack of specific units to care for patients at the end of life; such units could integrate the sharing the intimate knowledge into their concept of care or at least put that on the table. And that is what Homecoming began to do. When Homecoming entered the end-of-life scene in the Czech Republic Page 158 →in 2001, it began networking with people in the field in order to work toward precisely the evoked missing expert consensus. Several palliative experts came together with activists from Homecoming, emphasizing the “gray zone” of end-of-life issues that makes people lost and unhappy about the end of life of their loved ones. In Homecoming’s early informational flyers, distributed at their facilities as well as online, the nonprofit argued that civilized countries provide a clear frame for end-of-life care because they respect “human dignity” and do not answer to the modern medical condition with a slippery slope (see umirani.cz). Homecoming profited from funding in 2002–2004 from the OSF Foundation to foster legal changes in the domain of end-of-life issues, and it has since acquired other third-party funding, mainly for networking experts in the field of end-of-life care. Founders of Homecoming had taken part in the initial promotion for palliative care, and many of them lent their know-how by lobbying political actors as well as by promoting public awareness of the necessity of improving care for those who are terminally ill. It developed into a communication medium for reports from the annual palliative care conferences, steered by the CSPM as well as by experts from the leading palliative care centers in the Czech Republic, mainly in Brno, and from hospices. Homecoming then initiated the most prominent and the first mobile hospice network in Prague, but its importance for end-of-life care was mostly in its ability to provide a network for experts. One of the experts who has been the most prominent promoter of palliative care in the Czech Republic on Homecoming’s behalf, Marie SvatoЕЎovГЎ, connected the nonprofit with social workers, physicians, and nongovernmental activists beyond Prague. Her professional networks have promoted palliative care in the Czech Republic since 1996, and a network of palliative care promoters were the first experts who then joined the nonprofit Homecoming. Among them is the oncologist OndЕ™ej SlГЎma, the current president of CSPM, who brought to the discussion his work in Belgium, where euthanasia is permitted. The other ethical side of the debate has been driven mainly by Milan HamerskГЅ, who has devoted his political activist career to a strong liberalist doctrine. Initially an advocate for tax freedom, he slowly became interested in the issue of self-chosen death, which he still sees as his main goal in Czech politics. He founded a marginal political movement, Liberals (liberГЎlovГ©), and worked as a policy advisor on both local and state levels. Czech liberals were never represented in the parliament, and their impact on the Czech Page 159 →political life is marginal, although they had one candidate in the Czech senate, JiЕ™Г- ZlatuЕЎka, between 2002 and 2008, to whom HamerskГЅ was the policy advisor. From this position, he started to lay the groundwork for political support for the Death with Dignity Law. He teamed up with Boris Е ЕҐastnГЅ, a member of the main conservative party (ODS) who was by then also a member of the health-care division of the parliament; together they began to garner greater political support, thereby triggering the national debate. HamerskГЅ was able to assemble individual parliamentarians, senators, and public intellectuals but encountered a lack of interest when the legislative debates came up in the parliament and especially in the senate (interviews CZ 11 and CZ 13). The discussion thereby remained more or less limited to the expert community, in particular to an expert senate hearing in March 2008 on the proposed law. These experts nevertheless posed an interesting set of arguments for the development of the debate as they operated with the “confrontation” between moral arguments and the tradition of medical professions (see the transcript of the hearing, DЕЇstojnГЎ smrt 2008). The law was promptly rejected by the parliament, and all actors involved in the law text felt that members of parliament, while dismissing the law under the claim that other legislative matters were more pressing, in fact lacked the courage to discuss the law. HamerskГЅ, however, did not give up. Instead, he created a nonprofit organization to advocate for the Death with Dignity Law and to keep alive the debate about this ethical choice. He continued to report through his interventions in the Czech media and through his website on self-chosen death

legislation in other countries until 2015, when ZlatuЕЎka again entered high politics and began revising the law text. The Czech media formulate the need for acceptable place for death by referencing experiences with end-of-life care from abroad. The media usually construe the “need” for end-of-life care as something that differentiates the Czech Republic from other countries and thus should be changed. No matter whether they comment on the initiatives of Homecoming or on the initiatives of Euthanasia–Good Death, and no matter whether they argue for or against self-chosen death, these reports incite public debate regularly through covering globally well-known end-of-life cases, such as the Terri Schiavo case, the Italians Eluana Englaro and Peirgiorgio Weldby in 2006, and the 2008 French case of Chantal SГ©bire. These cases prompt one or another weekly periodical to run a general story about how the end of life is perceived in the Czech Republic and how the absence of a legal frame makes people feel “lost.”22 This was, for example, the case of the 2013 report in the Page 160 →weekly Respekt on the situation of a dying person, which coincided with the debate on expanding Belgian euthanasia legislation (TЕ™eЕЎЕ€ГЎk 2013).Respekt used such personal stories—either patients who wanted to travel to Switzerland or patients in health-care establishments—to highlight what amounts to an individual’s conflict with the Czech institutions that were ignoring the difficult issue at hand. At the same time, Respekt openly supported Homecoming, regularly covering the nonprofit’s activities and even acting as a collection point for readers to make monetary contributions to Homecoming.

“Back Home”: Intimacy and Good Dying Outside of Institutions In the Western system of health care, the end of human life has become a torment, in that huge money is spent unnecessarily and patients spend their last days in discomfort, in pain, and in deceptions. This is exactly the opposite of what most of them wish. The way to change this is not so difficult. V systГ©mu zГЎpadnГ-ho zdravotnictvГ- se konec lidskГ©ho Еѕivota zmД›nil v martyrium, v nД›mЕѕ se zbyteДЌnД› utrГЎcejГ- obrovskГ© penГ-ze a pacienti trГЎvГ- svГ© poslednГ- dny v nepohodlГ-, bolesti a iluzГ-ch. Tedy pЕ™esnД› naopak, neЕѕ si vД›tЕЎina z nich pЕ™eje. Cesta ke zmД›nД› pЕ™itom nenГ- tak sloЕѕitГЎ. (Respekt, 10 November 2013) This statement appeared in the Czech weekly Respekt, which became one of the most prominent media promoters trying to open the public’s eyes to the end-of-life controversy. The evoked “change” concerns mainly the missing legal frame of end-of-life specific services that has created a soft law practice in which both families and health-care professionals try to navigate through different sorts of institutional supports (and obstacles) in order to coordinate patients’ final days. The “need” for a particular end-of-life policy is formulated through intimacy and through the recognition that intimacy affects not only the way people discuss the end of life but also the way they manage someone’s end of life and the way they coordinate the professional community. Furthermore, it is on the basis of intimacy that the public judges not only particular practices of the end of life as good (the term being “good dying”), but also specific policy propositions. It is through intimacy that care is negotiatedPage 161 → both individually and collectively, but, at the same time, it is through intimacy that the negotiation becomes problematic. The position of Homecoming toward state institutions reveals its view that these are implacable and unable to accommodate intimacy. I develop this problem of accommodation further in the next section, where I show that this disparity between citizens and institutions appears also in Homecoming’s activities to create a “good end-of-life policy.” In order to emphasize the disparity between intimacy and the institutional setting, which is at the heart of all these discussions and debates, I rely on the role of “home” in people’s imaginaries as well as in care organizations. The phrase “back home” means therefore to expose how home, as a psychosocial category, is presented against the institutional background of Czech end-of-life care. The mourner is the communication nexus of this negotiation of intimacy on behalf of the patient and indeed is the translator: she communicates with

the dying one as well as with the care staff. She communicates also with those surrounding the dying one and by so doing is in a position to reflect on their attitudes and evaluate their truth claims. Assessing intimacy in terms of transmitting emotions, sharing them, and communicating them is oriented necessarily toward the respective organization of care. The practice of care balances between financial remunerations of the work and the social environment that makes that work “good,” “necessary,” or “valuable.” The acknowledgment of the caregivers has withal a central role in the organization of such care (interviews CZ 2 and CZ 22). At the same time, acknowledgment of both the patient and his or her family by the caregivers becomes the evaluating factor of the care, especially since the care of the dying is so often cofinanced by their private resources. Through their stories, the interviewees display where they see niches for the possible consensus and how intimacy is negotiated between a “want/can” and a “must.” Respondents’ Heartrending, Intimate Stories “How did you experience the end-of-life of your [family member/friend]? Tell me about your thoughts, anxieties: about what you liked, what you didn’t like. Just tell me how you specifically felt about all that. It doesn’t matter where you begin.” This was the only question I asked mourners. By way of answer I collected twelve painful stories about accompanying and mourning,23 twelve stories with the same ending but with different Page 162 →thoughts, anxieties, and wishes about what the end of life is or should be. The negotiation of intimacy at the very personal level between the dying one and his or her surroundings enabled me to gain access to the soft practice of care. Whether the respondent was Catholic, atheist, or a Jehovah’s Witness (one of the respondents) did not affect this practice; rather, the stories showed the overall importance of this psychosocial dimension of care—intimacy. I wanted to unveil what is entailed in the “need” for a better anchoring of end-of-life care in the health-care system—stated on many occasions during the public debate. The mourners evoked their requirement for coordination of the knowledge that exists concerning care for the dying, a coordination that would render the burden of the dying and their mourners less unbearable—not more bearable, just less unbearable. It was this requirement that led me to the role of sharing specific end-of-life knowledge and thereby highlighting the role of intimacy in the debate on end-of-life controversies. The mourner is at the core of the negotiation of the care of the dying person. It is the “mourner” who reflects on how things played out, how things could have been done differently, how feelings impeded some decisions or anticipated others. The mourner had been evaluating the emotional experience with the end of life of the friend or family member and offered a singular instance of the process of negotiation between “want /can” and “must.” Furthermore, the personal wishes of the mourner’s own potential form of care during her own dying could be revealed via the interpretation of these interviews, as interviewed persons very often also volunteered what they would like for themselves. This positions the mourner as the figure who explains the context in which she experiences the dying of another person. This is an important perspective, because it is the mourner who evaluates and reacts to the public debate about end-of-life care; it is the mourner who will judge it through his or her experience with the dying of the other. The following analysis of the inquiry with mourners endeavors to show the importance of intimacy for the practice of care. I start with a chronology of dying, the understanding of which is central to contextualize end-oflife care because it concerns the nature of care establishments and services that often do not comply with that chronology. It also brings forward the difficult assessment of financial aspects linked to the particular type of care. I continue with a diversification of the notion of intimacy as I could identify it through the twelve narrations. The notion of intimacy bears evidence of Page 163 →the negotiation procedure between the “want/can” and the “must” according to the “subject” (the mourner in contact with a dying person) and the context (home, LDN, hospice). These negotiations can be recognized in the modes of language the respondents used during the interviews and that I submit to the following analysis. That their loved ones were actually dying was something the mourners saw after the death. In the interviews, they began the dying, usually, with the first diagnosis. This affects the related practices because, as the disease

progresses or the state of their loved ones get worse, the mourners are in a sort of back-and-forth dynamic between the unwillingness to accept this change and the need to do something to help. As one of the mourners told me, “You know, even the day when it happened, I could not believe that this is it—that she is dying now” (interview CZ 26). All twelve respondents began with a brief introduction of the main characteristic of the person, when she was healthy, then told me the diagnosis that was in most cases “sudden” and “horrible”: “Once in the morning she just said she couldn’t stand up any more” (interview CZ 15); “And then she just told me she could not finish cooking dinner” (interview CZ 16). This introduction conveyed briefly the interviewees’ relationship to this person, which was important for understanding the emotional experience they spoke about in the explanation of the particular form of terminal care. The death of the concerned ones was “sudden” regardless of the length of time the mourners knew about the diagnosis or how geographically close they were. The “sudden” character of the event does not produce the space needed for reflection, and at the same time it reveals the need for support that coordinates quickly, clearly, and decisively. This creates a stronger need to deal with the issue of communication that is mainly translated through smooth access to knowledge of what they can do and what they must do. Moreover, the negotiation itself of what they “want/can” do and what they “must” do determines how they later evaluate the quality of the care received. This is evident in their stories about how they themselves tried to satisfy person dying. This context is necessary, in my view, in order to understand the category of intimacy that is put in place by those twelve stories and that creates the category “home,” thereby also creating the notion of an “acceptable place for death.” When trying to frame the end of life chronologically, mourners divided the experience of the dying into two parts: during the care, when there was not really “time to think” (interview CZ 26); and after the person was dead, Page 164 →when it felt as if the person had died “twice—first when the doctors came and then after the funeral, when I started to realize all that while organizing the administrative procedure linked to her death” (interview CZ 25). This aspect is crucial, as it highlights the importance of the subsequent reflection for how the intimacy of dying is being defined and how it is projected in the views on end-of-life issues. Mourners were more susceptible to situations in which the patient had to move to another establishment, especially when they were carrying the administrative burden of such a move. In general, the impression of not being “understood or acknowledged” arises with each contact with an institution. For instance, one respondent described to me the administrative procedures related to the fact that suddenly his mother had to be moved because, according to her home address, she should have been in another facility. He contrasted the time and energy spent making that move with the limited time she actually had left to live (which he did not see coming): If I could have changed something, you know, I think I would have been more severe with the medical staff.В .В .В . I always think about that day when my mother got worse. You know, she was about to have another stroke, and the physician kept telling me that we had to go to another hospital because that was where she belonged according to our home address. I think that if I had insisted that they treat her there where we were at that time, it might have been better for her later.В .В .В . Well, that is also what they told me in the other hospital once they treated her. (interview CZ 14) The wish to have been “more severe with the medical staff” reflects the need to have the medical staff acknowledge the status of this mourner’s mother, who was in fact already close to death, as he states retrospectively. It shows also an unpleasant feeling toward institutional restrictions. The fact that the respondent still expresses concern about this particular day reinforces this need for acknowledgment. Now we come to the pivotal role of the “individual” dimension in the evaluation of the care, which is in fact a dimension in which the institution shows that it cares for both the patient and the family, that it understands them, and that it acknowledges what they are living through. The statement “It is all about people, you know” (interview CZ 19) reflects a similar context of the insufficient acknowledgment of the nature of the situation of the dying patient; I heard very similar statements from five other respondents. One Page 165 →respondent began to explain the importance of human proximity and of physical contact with the patient and manifested by emphasis on the adverb “simply” the coherent manner in which the staff handled the patient:

“In that hospice, you know, this [making tactile contact with the patient] simply worked” (interview CZ 17). The same insufficient acknowledgment of the emotional experience was related to the way the diagnosis of the dying patient was dealt with and in particular was communicated to the patient. This part of the story affected the care because the mourner wanted to coordinate the last days of her sister, who was herself a doctor: He [the physician] just told her: “You know what it means to have cancer—it’s your job [to know that] there is no hope.” Even though she was a medical doctor herself, and she knew what it means to have breast cancer, that it can turn really bad, she was not his colleague in that situation! She was his patient, she had her emotions [to deal with].В .В .В . I think this [approach] was just unacceptable. (interview CZ 13) The respondent repeatedly recounted that “he did not have the right to say it [the diagnosis] like that” (interview CZ 13). This repetition pointed out the fact that the way of communicating the final diagnosis influenced the respondent’s experience concerning her sister’s care. The respondent reported on the many anxieties her sister experienced, which made her final days “more difficult.” Other respondents having their dying loved ones in LDNs mentioned insufficient communication with the medical staff: they complained about nurses who never smiled, who used rude or inappropriate words with patients, and who were almost “cynical” when the patient’s health condition worsened. One respondent was troubled about this mode of communication and explained to me very emotionally: “OK. Everybody knows that those people are incontinent. But why do they have to say that they are вЂshitting’ all over?” (interview CZ 15). Another mourner discussed her conversation with the doctor concerning a cure for her mother: “And then he just told me, вЂAnd what do you want? She is eighty-eight!’ Well, that was true, but she was very vigorous for her age, [so] it was important for her to be cured!” (interview CZ 21). These complaints gave witness to two troublesome situations: the inconveniences of the situation in which there is neither time nor energy to negotiate with Page 166 →the medical staff; and the highly emotional state of mourners through which they perceived their own capacity to act as limited. This reveals an important role for the politics of intimacy on this micro level, which not only furnishes knowledge about the body and the mind of the dying person, but places emphasis on the way this knowledge is shared and the context in which it exists. We can extract from these stories three understandings of intimacy that had an impact on how the respondents thought about care and what influenced their particular view of what should be done or how the institutions might embed the emotional requirement of the patients differently: (1) A new understanding developed about the intimacy of the body, which was expressed mainly by the limited individual space in care institutions or simply by the immanence of the physiological changes of the dying one that confronted the mourner either at home or when visiting him or her in a hospice or in the LDN unit. This was evident, for example, when respondents spoke explicitly about the dying person’s reduced physical function: “She was very uncomfortable the first time I had to wash her when she could no longer go to the toilet by herself. I told her вЂMum, we’re going to get used to it.’ And we did” (interview CZ 26). The other context was when specific personal-care interventions had to be undertaken by close family members: “Everybody was shocked when I said that we do the manual bowel movement [digital evacuation] on our own with my mother. I didn’t think about it. I took it pragmatically. The only thing that bothered me was the possibility of a perforation. But we had a physician in the family” (interview CZ 17). (2) Respondents also referred to intimacy as a certain psychosocial harmony that can be differentiated further to (a) a discrete communication of the mourner with the dying person and to (b) empathy toward the needs of and the acceptance of the emotional experience of dying persons by strangers and by others around them, especially the care staff.

(3) Linked to point 2, intimacy appears to be a way of transmitting these specific experiences. This third layer is revealed not only through the stories but also through how the inquiry proceeded, whether respondents were or were not articulate and confident, and which aspects of the interview process seemed to place a burden on them and which made them feel more comfortable. For example, one respondent set up the interview in the bar where he worked for a Sunday afternoon two hours before the bar opened. He used this room, he told me, because he was certain both that we would be alone and that he would be at work on time. During the interview, he smoked Page 167 →constantly, lighting a cigarette whenever his narrative became difficult, such as when he spoke about his mother being moved to another facility although she could stay—and should have stayed—where she was. In such a threefold notion of intimacy we can observe how the psychosocial dimension of home acquires a vital importance if the concerned person referred to the setting as “home.” Eventually, the new care situation was conceived as a professionalized setting in which emotional experience must be embedded the same way as at home. Everything had to be taken into account, well organized, and with a respective focus on intimate communication. This meant for these people to communicate respectfully, not in the sense of “And what do you want?”—as one mourner explained the staff spoke to her when she was complaining about insufficient care for her mother. She was stunned by the way the staff communicated with her, as if this weren’t a service the family was already paying for. Even if switching the care locale might be initially “horrible” (which it was for every one of my respondents), the care unmasked for the mourners their obligations: to “get used to the situation” even if it is “strange,” and to search for an “oasis of calm” even if there were “cleavages” in the communication with the dying person because of his or her mental state or because of deteriorating health that was disheartening for the patient. What becomes exposed through these stories is that, in one way or another, intimacy is a negotiation. It is a negotiation between what conventions suppose the mourner “must” do and what he or she wants to do. It is then a negotiation of the care for the dying one in response to other everyday responsibilities, and also a negotiation between the individual situation and the surrounding collective (hospital, other family members, the workplace, etc.) The space for communication and the respect for communication as a crucial part of the care for the dying patient were emphasized by all respondents: two articulated this in the context of diagnosis delivery; other respondents with LDN experience were “shocked” by how the patients were treated in the LDN center “without respect” and “as objects”; and in the responses concerning home care, the necessity of communication was revealed in a positive sense (“It was important that I was with her, that I talked to her” [interview CZ 13]). A younger respondent told me that she was constantly uncertain as to whether she should be a “good mother” by being with her young son or whether she should be a “good daughter” by taking care of her mother: “You might think that it is evil to reflect whether I have to be more with my three-year-oldPage 168 → son or with my dying mother. But I had to think like that. I could not leave the baby alone, nor could I abandon my mother. But I was alone” (interview CZ 15). The same sort of negotiation took place outside of the family, either with friends or with outside society, represented by work or by the hospital and its organization. One respondent explained that she was supposed to take part in religious ceremonies that were obligatory for the whole community, but that she ultimately missed them in order to remain with her mother all the time. “Some of them thought that it was not right of me to skip the ceremonies. But I knew that if I went there, I would not be present mentally anyway, because I would be thinking the whole time that I could be with my mother” (interview CZ 26). A similar negotiation—and in fact a search for acknowledgment by the collective—was reported by a respondent who quit his job because his aunt was transported to the hospital and he wanted to be available to visit her more often and to assist his mother, who had been taking care of his aunt (Interview CZ 25). In addition to the notion of intimacy beyond the home context, these stories reveal the challenges that intimacy poses to the coordination and sharing of knowledge once it is exposed to the collective or embedded in the institutional setting. As the stories put it, the institutional setting of care was not such a problem; rather, the way intimacy was positioned in this context was the main difficulty. Additionally, some respondents stated clearly that having the family member at home would have been neither a reasonable nor a feasible solution: “My

grandmother could not take care of him. She was too weak, and it was clear that he had to go to an LDN. But he wouldn’t eat there. He waited for Grandma to bring him what he liked to have” (interview CZ 14). Nor did this seem desirable from the patient’s perspective: “She sent her kids to [stay with] me, and they were here until the last day. She did not want them to see her dying” (interview CZ 13); “Everybody asked me how I could cope with the situation where I was traveling constantly between my mother’s home and my husband. How could he cope with that? Well, I think that that is exactly the reason why he could cope with that. He would not [have been able to] stand it [seeing his mother-in-law dying]—I am sure of it” (interview CZ 17). The “home” for dying was somewhere other than in one’s living room: it was in the caregivers and their dying loved ones’ notion of intimacy that had been somewhat in a constant potential conflict with the institution. Page 169 → Professionalizing Intimacy: Homecoming Enters End-of-Life Care If people went to a hospice with the dying patient the same way they go to a dentist with a tooth that hurtsВ .В .В . if it would be normal to contact us and people would do it automatically, they would not feel insecure or anxious about the care. (interview CZ 8) The twelve narratives from my respondents offer an important challenge to any policy design, as they highlight the complex chronology of dying that cannot by planned for and as they give a crucial role not to cultural and ethical aspects but to the psychosocial dimension of knowledge about the end of life and the way this knowledge is shared. The mode of communication in the end-of-life care sector not only is something of a bonus to the debate about how particular policies should be designed or formulated, but lays the foundation on which the discourse on “good dying” and consequently any concept for end-of-life policy is built. The Czech nonprofit Homecoming used precisely this sort of knowledge from its earliest activities in 2001 as a support for the claim that Czechs can and want to have the same type of end-of-life care that people in other countries have. It posted on its web forum stories similar to those I gathered through the interviews, and it used them in its larger information agenda to show how intimacy—by steering particular knowledge—is translated in the respective steps of end-of-life care. In that sense, the organization hit exactly this point by focusing on the lack of knowledge and on the lack of coordination of the free-floating lay knowledge, which comprehends fears, anxieties, loss of hope, and so on. The core of Homecoming’s activities is to follow and to find solutions to stories about dying fathers who—if they knew that this is the last month of their life—would call their faraway son to return to the Czech Republic or about dying wives who spent their last day on earth being transported from one hospital to another because “nobody really knew where to put her” (interview CZ 8). With claims as these, it joins in fact the opinion of mourners and lends support to the surveys mentioned earlier that show that 80 percent of people are dissatisfied with how medical staff communicates with them. Homecoming’s consultation services, accessible online, endeavor to fill the gap of awareness about care for the dying, about symptoms that accompany dying, about possibilities of taking care of loved ones at home, and Page 170 →about how to reestablish home in an institutional context. They are aware of the pioneer character of their project, as one of the founders of the nonprofit explained to me: We feel like a one-eyed king in the land of the blind.В .В .В . When I was on the phone and received our clients, I heard all the time, “This is the first time someone has talked so nicely with me. You are so kind. You must be an angel.’ It hurt me. It hurt me because I knew that we are—sorry for being so rude—only parasites on a structure that does not function in order to satisfy the needs of dying ones and their families. (interview CZ 8) Homecoming professionals distribute knowledge about the end of life and endeavor to establish suitable networks so people can coordinate the end of life of loved ones at home. As they put it, although individuals know what they “want” to do, they are constantly told by ethicists and medical staff what they “should” do,

which makes them uncertain about whether they really can do the thing they want to do. The organization holds that care for the dying is neither common nor omnipresent in everyday life, the way a visit to the dentist would be. The director of Homecoming explained that, although unsatisfied with the specific end-of-life services offered by Czech institutional settings, most people feel insecure about venturing outside of that system: Well, if you ask what the family “loses” or “has to sacrifice” when they come to us, I think that it is the secure link to an institutional embedding that would [otherwise] be familiar to them. Hospitals [and] LDN centers—[families] know these provide all the care services instead of them [the family]; they do the work for them.В .В .В . But they [the institutions] also make them unhappy.В .В .В . Once [families] see that we can give them the same technical security, that we offer them support, I think they are happy. (interview CZ 9) Homecoming is aware of the disparity between spontaneous solutions and decisions concerning care that Czechs choose as a replacement for some concrete policy. Their situation is further complicated because fragmentation characterizes both the communication of various nongovernmental projects on palliative care with the nexus of the health-care practice and the connection of these projects to family doctors. This disparity goes hand in hand with inconveniences within the social security system, such as inadequatePage 171 → financial support for people taking care of their relatives, and their exclusion from the everyday practice of economic activity when they’ve given up their jobs in order to care for relatives, which subsequently makes it harder for them to reenter the job market once the relative is dead (interview CZ 26). All these bureaucratic inconveniences produce fear and anxiety in addition to the relative’s having to face the death of their loved one. The lack of information and of advice, and the lack of knowledge about where to search for such advice, seem to preclude “good dying,” and such information, advice, and knowledge seem to be the exclusive goods that ensure “good dying.” It is interesting to see how Homecoming uses through its activities the loss and destabilization of the needs of citizens and how its argumentation stems directly from the anxiety both raised from death and dying itself, which is steered further by the fuzzy policy situation. The way Homecoming’s professionals give their clients a frame to feel and live the dying process in the society reveals the importance of intimacy in the Czech end-of-life debate. In this sense, Homecoming aims at reconciling the intimacy of dying with some kind of institutional embedding. The organization provides families with a measure of initial support and then accompanies the families at home. On the one hand, the way Homecoming runs its activities suggests that both dimensions—intimate knowledge and institutional embedding—might be reconciled through distribution and sharing of the knowledge related to the end of life. On the other hand, the association adapts the category of a “home” on the conditions of the economically active population. It works with the emotional dimension of a “home” also in psychosocial support, and this transgression of the meaning of “home” shows the potential of public power that rises from governing through intimacy. However, as we see later in this section, this potential becomes problematic, as it exposes the ambivalent relation between autonomy and dignity discussed earlier. “You would be surprised at how emotionally people write in these forums” (interview CZ 9). These are the summarizing words of the chief manager of Homecoming’s online content at Umirani.cz. She points out the positive effect of having the space to speak about emotional experiences and to publish them online. “People receive a sort of listening ear that makes them feel more secure in their difficult situation,” she explains. At the same time, they can easily get information concerning care for the dying that they lack: “In general, people do not knowВ .В .В . where to look for help,” the chief manager continues. “They are sort of outside of the table charts and statistics, Page 172 →because end-of-life care is a different type of care compared to intensivecare units or acute medicine.” Homecoming’s website contains two separate online forums:24 one dedicated to interaction with experts, and one dedicated to discussion within “dying peers,” that is, persons confronted in some way with dying. Both of these forums are further differentiated into various sections: providing information for experts in the field

(especially nursing staff and doctors) as well as for patients and their families (mostly the first type of the forum); a special section is dedicated to mourners (including a section titled “The Last Weeks and Days”). Whereas in the expert forum the general consulting mode is mainly preserved (i.e., an expert’s answer to a question by patient, nurse, doctor, or relative), a relatively opened mode of communication is maintained in the peer forum. In the latter, questions are not always “answered” but instead are usually “discussed.” Taboo information or other information that might be emotionally difficult to ask in person can be asked quickly and anonymously. Various questions related to financial support during and after end-of-life care, side effects of pain medication, consultation on the mourning process, and pain related to the loss or to the fear of losing the dying person are the main areas of discussion. The section devoted to mourners and people whose relatives and friends are close to death is brimming with posts about feelings, wishes, inconveniences, and anxieties. The fear of naming which emotions they are experiencing seems to be at stake in these exchanges. A mourner expresses the role of words in communicating the difficult emotions when facing a loved one’s death: “[The site’s] contents are helpful at times, when the need to learn what is happening is greater than the fear to say it, or to read it, aloud.” But still, forum users remark about emotions through personal stories, through rhetorical questions, and through allegorical reference to quotations and books.25 This repeats the theme of the importance of sharing their experiences and emotions with others. Similarly, respondents in my inquiry emphasized the necessity of having someone to talk during the difficult period. One respondent repeated often: “Well, my daughter told me that I should not be sorry about that”; “Then I spoke about that with my daughterВ .В .В . this was much better” (interview CZ 26). All discussants in the web forum emphasize the dimension of sharing and acknowledging. In the discussion titled “Dying and Grief,” emotions and dying come explicitly to an intimate relation: peers are asked about specificPage 173 → emotional experiences, about the needs of the patients and mourners, and they console one another and may even exchange contact information when they discover they are in the same situation. Most impressive is the story of two girls, “RomДЌa” and “KamДЌa,” who exchanged with each other on the forum their experiences with the loss of their parents at the age of thirteen. “Do you feel the same as I do? ” is the main narrative of their exchange. The question of whether those two girls really exist or whether their profiles in the Internet discussions are invented is in fact inconsequential here: their stories gave rise to responses that demonstrate concern and empathy, and it unveiled the repository of emotional experience at stake in such situations. Summing up the concerns in the web forum, one could make the assumption that border-free access to information, an appropriate communication mode, and a consistent emotional awareness are the crucial missing elements in the regular institutional practice of end-of-life care. The Internet initiative integrates these three aspects by being aware of the importance of the access to knowledge, its mode of communication, and by enhancing awareness of the intimacy of the patient and his or her family.26 Homecoming links the intimate topic of dying with the discretion that can be achieved through the Internet. It connects patients within the dying-peer forum and demonstrates a governing dimension by giving patients and mourners a specific time and place that remain “under the control” of the provider, in this case Homecoming. The discussion forums can be therefore regarded as a specific organization of the emotional experience that shows, on the one hand, the psychosocial dimension of the end of life that invites us, on the other hand, to think about the use of emotional experience beyond these virtually formed and virtually mediated social groups. While the commonly known context of these discussion is to speak about dying within the family and home surroundings, or at least in a very intimate context, this traditional practice no longer seems to function. Dying is currently dealt with in public institutions such as hospices and special units in hospitals, where it loses the specific context of intimate matters.27 From that perspective, the development of an alternative form of interaction and communication results from this kind of destabilization of how we commonly imagine and organize the death and dying of those close to us. Homecoming expresses this transgression mainly through a very familiar interaction of the experts and the “dying peers” (e.g., phrases such as “I understand you” and “Don’t hesitate to ask”). The use of bottom-up knowledge and of the emotional externalization in the expert Page 174

→forums of the initiatives also show the possibility of a situational transgression from “intimate discourse” of dying to a discourse on dying that is “intimately communicated.” The nature of the information provided in both types of forums varies from normatively oriented claims (references concerning “good” palliative-care centers, “useful” books or quotations from “authorities,” the “expert papers” describing how to proceed, and the “casuistries related to pain and other treatment of symptoms”) to peer-oriented discussions of feelings, anxieties, and wishes. Homecoming’s advisory services about how to grieve, how to take care of the terminally ill patient (“The Last Weeks and Days” section), and how to mourn can be looked upon as self-governing practices. Not only does Homecoming distribute the information, but it also distributes what is essentially state-of-the-art knowledge about the appropriate location of dying. By helping “to manage” the dying process, that is, by giving bioethical, technical, and psychological advice, this communication becomes a form of self-governing through practice for the consulter of the website. We now analyze how this relates to the larger context of institutions acting in the field of end-of-life care. The forum responds to the challenges presented by institutions because it creates a specific organizational context that enhances certain modes of language concerning how to talk about the emotional experience of loved ones’ end of life and as a way of sharing it among web users and experts. It shows how actors can govern the field through emotional knowledge. The core of communication in the initiative, and the core of the governing function of intimacy, consists of the ability of situational transgression and the capacity to conform the communication contract to the needs and wishes arising in the peer forum. Governing through intimacy means here to offer a “free” forum for mourners about how dying causes sorrow, how to be or not to be “sad.” At the same time, this forum incorporates Homecoming’s follow-up strategy of deciding what to post and which expert discussion to encourage. This type of interaction allows the possibility of the individual describing his or her intimate sphere and thereby revealing to the expert where the problematic key points lie. Let us look more closely at how interaction functions on the web forum and how it accommodates intimacy. Triggered by the invitation “Let us speak,” the initial communication mode is paternalistic. Users are invited to consult information, to ask questions. The forum offers a particular settingPage 175 → where dying can be addressed and emotions can be shared. Nevertheless, the communication of the initiative often switches to more peer-oriented mode, where emotions just free-float peer to peer. This plays a crucial role because such a communication mode is contrary to the commonplace institutional practice of dying care of an expert-to-lay communication mode. Intimacy is communicated by switching between the paternalistic mode and the peer-oriented one. The use of “I,” rather than the didactical “you,” definitely gives more of a performative dimension to the communication. The first question in the expert forum illustrates it very well: “How can I say death is on its way?” In the same logics, the first-person plural pronouns are used in all its forms: “Death accompanies us, it is a consequence of our birth, it applies to all of us, and no one is going to avoid it.” The inclusive character of “we” is emphasized through the opposition to “no one”: “No one should be left alone”; “We can help you to manage the dying.” This mode includes “everybody” in this feeling and makes it “normal”: “It is normal when we feel alone” (everybody can feel alone); “It is normal when we cry” (everybody cries). The same “we” can simultaneously have the character of a self-help group when facing the difficulties of care for the dying. Indeed, the most frequent way of answering in the mourner forum is the one beginning with “we.” Even when “I” comes to the fore, it is used as a link to the communicate on partner and builds again a “we” category. Posted items like “If I were you” and “I can imagine how someone like you can feel” support the community feeling. The use of “we” goes beyond emotional consideration of the problem of dying care and builds a meaning-making community: users post events, advertise recent publications and doctoral dissertations, and comment on the actions of the initiative. By using inclusive pronouns, they follow intrinsically the same outcome. The forum shows self-governing of the meaning-making of dying care through emotional exchange.

The intimacy of dying through such stories helps to settle the emotional experience even within the interaction of respondents with experts. This happens, for instance, when someone praises in a very individual and emotional way a hospice center in the mourner forum, which then can be found in the “Contacts for Hospice Centers” section, or when, in the “Experiences with Dying” discussion, a respondent praises the knowledge provided in the expert forums. Especially in cases where “we” is used by the Page 176 →presentation of the aims of the organization itself, one can consider the strategic dimension of this mode for the institutional practice. Respectively, Homecoming states, “We want to introduce the structural, social, and legislative changes,” and emphasizes the compact character of the community by noting that appropriate dying care can and should be achieved “everywhere.” This communication mode suppresses the division between public and intimate and provides important input on how intimacy is implemented in the meaning-making of dying care. Users participate in the transmission of the knowledge by bringing together intimacy and institution through permanent negotiation of emotions that intimacy implies not only in the peer-to-peer communication but also in the expert-tolay communication. The switch is important here because it gives intimacy a sort of continuity of respect in both settings. The Internet forum also brings forward the importance of acknowledgment of the intimacy of dying. The technical context of the web forum regulates the debate in the sense that the individual can be sanctioned (socially or financially) if she does not respect the conditions of use and because within the use of the medium her wishes and expectancies are crystallized.28 On a more general level, it shows that intimacy steers self-governing practices that help shape a particular view on end-of-life care. For example, personal stories discussed in the “dying peer” forum are used in order to establish references to the posted items in the expert forum and the integration of personal experiences among other experts. A mourner praising a hospice service reflects the establishment on Homecoming’s website of which ones are the “good palliative care centers.” All this can be seen not only as using intimacy in establishing the discourse on good end-of-life care but also as a bottom-up steering of the emotional experience with the end of life. The forum demonstrates that intimacy is a discrete knowledge about the end of life and a pattern of sharing this knowledge. The discrete knowledge consists in revealing truth to patients about their medical state, and giving patients the possibility of negotiating their own dying because they are prepared. I explain in the next section how Homecoming further uses intimacy in order to work with the metaphor of “home” and how it connects the forums’ activities with other activities in order to steer and network the expert community and to set the political debate on the issue. Page 177 → Domesticating Intimacy inside an Institution We felt that people should know how they can improve the last days and weeks of their loved ones, and this advisory service is a form that helps them to understand it and to improve it. (interview CZ 4) Using its forum, Homecoming helps people organize care for their loved ones within the context of new family situations and lifestyle choices. Its activities at the same time foster what is in essence a repository of knowledge about end-of-life care and a vehicle to enhance its awareness among citizens in the Czech Republic. I analyze the policy activities of the organization between 2001 and 2007 on the web forum with other activities of the Homecoming organization in order to show how intimacy on the web is transgressed in key features of the organization’s care concept. Homecoming has advanced public knowledge about the end of life through information campaigns, opting for a bottom-up perspective. The organization’s flyers—with titles such as “Without Pain?,” “Can We Give You Advice?,” “We Can Help Each Other,” and “About Pain”—distribute this knowledge in manifold ways but also emphasize emotional accounts. “Intimacy” and “home” are categories used to steer the meaning of “good end-of-life care.” In a similar vein, Homecoming organizes training seminars for professionals, in which it explains that staffers employ such conversations when dealing with their

clients at home and when discussing uncertainties in the development of the illness or the inevitability of death. Reciprocal trust and acknowledgment of the client’s emotional needs are necessities in the organization’s negotiation of client care, and they are skills that all Homecoming staffers must master. Through its information, dissemination, and training activities, Homecoming completes a threefold embedding of intimacy that we have identified in the mourners’ narrations and that I have extracted also from the web forum. Mainly, intimacy responds to the everyday notion of care that is felt to be “depersonalized” (interview CZ 4) and “full of myths and lies about how care for the dying causes only problems and pains” (interview CZ 9). In the framework Homecoming offers, intimacy is expressed through a validation of the emotional experience by others, and this validation transgresses meanings expressed by users of the forum to the organization’s relevant concepts. First, as we have seen in the previous section, families are given validationPage 178 → that their emotions are comprehensible and acknowledged by other patients, caregivers, their peer community, and Homecoming experts. Second, Homecoming validates its concept of end-of-life care through that emotional knowledge by promoting it in its training activities (interview CZ 6) and by relying on this body of material when “lobbying for a better institutional embedding of end-of-life care” with funding institutions and the Ministry of Health Care (interview CZ 4). Homecoming’s experts disseminate this knowledge farther afield in scientific papers and media articles (SlГЎma 2001; SvatoЕЎovГЎ 2008; Е pinkovГЎ 2008). Knowledge about the end of life is a result of negotiation of both elements: the request for intimacy and the frame supplied by institutional practices in general. This frame is then strengthened beyond Homecoming’s Internet initiative through its mobile hospice care unit. Homecoming’s activities have to do not just with providing knowledge, but with steering the categories of dying (pain, mourning, sharing last moments, preparing for death)—which are at the beginning of the experience meaningless because they are epistemologically unknown—within a specific context. To steer meanings about the end of life means to communicate context through subjects that incorporate values and imaginaries that users would stick to. Moreover, it also means positioning users toward each other so they have the feeling that they “share” the intimacy of dying and are “not alone” (interview CZ 26). This activity shapes the negotiation of how dying care should be understood as such. The coordinator of the initiative adds: “Indeed, with the establishment of the forum, we wanted to spread our information even beyond the borders of our hospice clients in Prague” (interview CZ 9). The knowledge-based governing doesn’t just enhance awareness about the possibilities in end-of-life care—it provides a platform for finding out what kind of knowledge is missing and how it should be communicated. The personal story of forum users is connected to a leading Czech network of hospices centers and helps the knowledge to be accepted by other hospice providers who encounter difficulties with the organization of dying care. This interconnection was the main feature of starting of the Homecoming’s online activities: We have seen that what we do [organizing a mobile hospice in Prague] concerns just a few people in our environment. We wanted to reach more people who do not know what to do, because we have experienced that that is where the problem of end-of-life care in the Czech Republic starts. People do not Page 179 →know that there are possibilities of softening the pain, that they can get assistance that helps them organize care at home. (interview CZ 8) To “know” means for Homecoming to be able to act, which leads us to a reframed notion of polity in which institutions govern through intimate knowledge. In Homecoming’s eyes, the organization’s strength is its ability to coordinate intimacy. But intimacy is seen by Homecoming as a bottom-up knowledge, and this affects how coordination occurs. The myriad and detailed personal stories told by Homecoming and its website posters about unsolvable questions create a context in which externalizing emotions is not just allowed but actually demanded (“Cry, cry, cry; that is my advice for these difficult days”—web forum). A change in institutional practice is desired by all those peers. They complain about the difficulty of end-of-life care (in “experiences with dying”); they often demand systemic changes; they blame the institution as such (hospitals or palliative-care centers) for not having

done everything “on the emotional level.” In the “hospices” section, posters frequently claim a lack of “right communication” or “human proximity.” Terms such as these work together with the home metaphor that Homecoming disseminates through its activities. All the interviewed representatives of the staff stated unequivocally that “people should simply die at home” (interviews CZ 8, CZ 9, and CZ 20). Other medical staff points to the “normality” that should be assessed within the care of dying ones. Homecoming enhances this practice by establishing a network of mobile nurses, doctors, and volunteers who assess the last days of the dying in their families: “Remember that we enter only for a very short visit. We are only visitors there: we do not disturb them, we do not try to change their life-style choices but respect them” (interview CZ 28). They conceive of their activity as coordinators, as those who are able to handle the complexity of the situation, from communication with the family doctor to conveying the final prognosis: “Nobody tells them.В .В .В . Very often we are the first to tell them that soon it will be over. It is important for them to know [this so] they can say farewell to each other, organize things, conclude life” (interview CZ 8). Returning to the example of dying-peer forums, these give another, broader example on how the negotiation of intimacy and of “home” that takes place at the edge between how “want/can” versus “must” can influence the particular form of a home that individuals promote. The conventional communication contract related to dying would be to discuss and deal with Page 180 →dying in the family surroundings or at least in a very intimate context. As the inquiry about the decreasing number of funeral ceremonies puts it, such a conventional communication contract no longer seems to function. Simultaneously, dying has to be dealt with in public institutions such as hospices and special units in hospitals, where it loses the specific context of an intimate matter anyway—this is clearly indicated in respondents’ complaints during their storytelling. From that perspective, the building up of an alternative form of interaction and communication results from this kind of destabilization of the practice of care that is rendered more autonomous in the organization but not in acknowledgment by the medical experts. Intimacy emotionalizes the context of the meanings free-floating in the web forums and creates the pattern that makes the meanings accepted: intimacy constitutes coordinating the knowledge of “home” and of “good dying.” This is particularly the case in the discussions in the sections titled “experiences with dying” and “mourner forum” because they touch on the emotional experience explicitly. “Home” builds the general context of intimacy, and the alternatives discussed in the forum concern the adaptation of the proposed dying care to the meaning of “home”: the best example is the section titled “How to Assess Care at Home.” “Home” is an abstracted category filled with emotional needs and imaginations rather than with particular spatial requirements. It is a space respecting intimacy: “I arrived at the hospice. The first smile of the nurse and her warm grasp of the hand tell me that this is the right place for my father.” Empathetic and emotional externalizations are the cause of creating an appropriate place. Emotions expressed in an appropriate situation and in an appropriate way result in the “right” feeling of intimacy. “Home” is negotiated within emotions: emotions that are this time discussed and exercised by public actors, the interplay of which is crucial for the creation of the meaning of “intimacy” that becomes its incorporation. Again, in the same logic of the category of “home,” “good dying” is shaped by the familiar, the empathetic, acknowledging the emotional experience of the other. The free-floating of personal stories and of unsolvable questions gives an idea of a self-governing network that functions through common knowledge. In the next section, we see that the crucial role of intimacy for the end of life is not limited to Homecoming’s networking activities inside of its community but that such activities also shape its opponent, Euthanasia–Good Death, as well as the general public debate that became more explicit from 2007 onward. Page 181 →

The Liberal Democratic Paradox: Quarrel over Domestication of Intimacy I was not prepared to assess dying medicallyВ .В .В .В , but this went beyond the common feeling that you are not

prepared for real practice from your studies. There were things we were trained in, and facing dying was not something we were trained in. In my first practice, I had one person each week dying in front of me. That was more than patients with a lung embolism or a heart attack or HIV, which was one of the main trainings we got. (interview CZ 5)

Between 2001 and 2007, the debate over end-of-life specific legislation was going nowhere. In 2007 appeared the other end-of-life choice, bringing two visions of good dying into the public discussion. Although the legal proposition on assisted suicide was unsuccessful the following year, and the debate returned to its original course, it enrolled a dynamic showing that Homecoming’s domestication of intimacy had its limits. Homecoming’s argumentation with its opponent, Euthanasia–Good Death, from 2007 onward suggests that the deadlock dynamic of the controversy is not some kind of policy breakdown, but reveals to us the core of the end-of-life controversy. Up until 2007, Homecoming nurtured its image as a nonprofit that battled its way through the Czech institutional landscape in order to win financial support for its activities and also to find a way to advance specific end-of-life legislation. Its story of becoming a player in the legislative debate casts it as something of an outsider figure, where debate in this policy sector is shaped by fragmentary data, and by loose, informal networks as a mobilizing device. Homecoming influences the policy formulation by knowledge gathering and by formulating projects that deal with the topic as if it were a fight between the individual wish and the implacable institution that does not look dying straight in the eye, that does not see death as common and as banal as a “dentist’s visit” (interview CZ 2). By 2007, however, it became apparent that Homecoming was not the only organization doing this. Euthanasia–Good Death had also built its own story on the opposition between the individual and institutions. Euthanasia–Good Death also mobilized people who “sincerely” wanted to fight the unofficial euthanasia taking place within hospital walls. They fight for freedom of the individual, as they indicate in materials that stand against the wall of conventions, prejudices, and societal bindings. What is more, they do not want to oblige anybody—they just want to provide a legal frame to those Page 182 →who see their end of life as unbearable (LidovГ© noviny 2014a; DVTV 2014). Yet to get this policy advocacy successfully represented in a concrete legal frame would mean that the premise of freedom and autonomy could itself become a societally binding institutionalized practice. We see from 2007 onward that both nonprofits set up their stage within a necessity to act against “evil” or “implacable” institutions (interviews CZ 5 and CZ 13). Furthermore, we can draw a certain analogy between this sort of action on the one side and the mourners and medical staff on the other. We have seen in the twelve respondent narratives that mourners attempt to handle their fragmentary knowledge about what the end of life of their loved ones should be like, or could be like, and they may feel lost or insecure because they lack a guide through the end-of-life landscape. Similarly, the medical staff carries out its professional activity within loss of some grounded practice knowledge, as laid out in the preceding quotation by a palliative physician. The professionals claim to lack a clear frame that would make their day-to-day practice less frustrating. “Per definition, nobody is satisfied when we do not have a frame to follow,” one nurse told me when describing her main difficulties in everyday practice (interview CZ 22). Euthanasia–Good Death serves as a mirror in order to be able to veer away from a particular ethical end-of-life choice and to look more carefully at the institutional dynamics Homecoming offers. For both Homecoming and Euthanasia–Good Death, their role as “pioneers” in the field encourages them use a strategy in which they highlight the individual who finds her way and should be trusted. This de facto promotion of self-governing practice not only becomes the object they advance in order to promote their policy proposition, but also becomes their own virtue and the way to fight against the rigid institutional background. As do people in the everyday experience with their family members who are dying, these nonprofits also have to rely on themselves, and they become frustrated by the system’s failure in the same way mourners do. This virtue is translated through the individual who needs to be listened to, protected, and taken seriously. Both

nonprofits nurture this in three ways: through the use of international references, through the emphasis on a serious and thorough discussion, and through the need for a “home.” At the same time, however, the political articulation of these strategies builds the key point in the deadlocked situation. Since they are nonprofits advocating for a better legal frame, their activities have to go against the ways in which they have built their argumentation. They need some institutional Page 183 →support to get the idea implemented. But this would mean admitting that the discussion could be over and that someone else could also be entitled to speak about the absolute and exclusive notion of death and dying. Both of these results are intolerable, as they go against the nonprofits’ way of domesticating intimacy. Post-2007 International Discourse Strengthens the End of Life Debate Pressure for the legalization of euthanasia is growing in all developed societies, including the Czech Republic. The view that, at a certain stage of an incurable disease, it is better to end the suffering rather than carrying it all the way to a natural end, is becoming more widespread, even among people who have religious beliefs.В .В .В . To incline toward euthanasia seems to be a civilization trend, as confirmed in particular by increased tolerance for euthanasia in the Benelux countries and in Switzerland. Of course, this does not mean that the Czechs have to adopt this trend and accept euthanasiaВ .В .В .В , but we have to understand that there is no way to escape the complex and detailed discussions on this topic. (Tlak na legalizaci eutanazie roste ve vЕЎech vyspД›lГЅch spoleДЌnostech, tu ДЌeskou nevyjГ-maje. MГ-nД›nГ-, Еѕe v urДЌitГ© fГЎzi nevylГ©ДЌitelnГ© choroby je utrpenГ- lepЕЎГ- ukonДЌit neЕѕ je nГ©st aЕѕ do pЕ™irozenГ©ho konce, je stГЎle rozЕЎГ-Е™enД›jЕЎГ-, dokonce i mezi lidmi kteЕ™Г- majГ- nГЎboЕѕenskГ© vyznГЎnГ-.В .В .В . sklon k eutanazii se zdГЎ bГЅt jakГЅmsi civilizaДЌnГ-m trendem, jak potvrzuje pЕ™edevЕЎГ-m zvГЅЕЎenГЎ tolerance k eutanazii vВ Beneluxu nebo ve Е vГЅcarsku. JistД› to neznamenГЎ, Еѕe by se ДЌeskГЎ spoleДЌnost mД›la po tomto trendu vГ©zt a urychlenД› prijmout eutanazii.В .В .В . Jen musГ-me pochopit, Еѕe komplexnГ-, zevrubnГ© diskuzi na toto tГ©ma se nevyhneme. ) —Petr Fischer, HospodГЎЕ™skГ© noviny, 26 August 2014 When both camps made their cases in the public debate as the issue of assisted suicide made headlines in 2007, the strategy they applied was to deploy international references on end-of-life policies. In the context of the overall push in the Czech Republic to become part of Western Europe, both nonprofits used references from abroad to show that what they fight for is possible. The Homecoming director I interviewed in 2007 had a lot to say, when we spoke about the difficulties of the Czech legal frame, about the organization’s workshops with Austrian colleagues and the Austrian tradition of mobile hospices, which makes them part of the everyday life experience Page 184 →of the mourners. She wanted to point out with this comparison the evident need for a mobile hospice network in the Czech Republic as not something specific to the country but rather more like a universal human value. One mourner I interviewed had her mother in Vienna, and she supported Austria’s imagining that things can be better organized around a network of mobile hospices (interview CZ 17). The main promulgator of the Death with Dignity Law and the director of Euthanasia–Good Death, Milan HamerskГЅ, explained to me that the discussion on self-chosen death is a crucial part of the Western liberal democratic discussion on the individual (interview CZ 10). In the media, he outlined the specifics of the Swiss legislation in order to state that there is a good example to follow. As Euthanasia–Good Death noted on its Facebook profile (August 2014), there is “a simple solution for a complex problem.” One palliative physician explained to me that his opinion on assisted suicide changed as a result of his Belgian experience. Not that he would now support this practice, but he now understood that the patient’s individual autonomy plays a major role in the establishment of this attitude (interview CZ 5). From 2007 onward, he was often been quoted in the Czech press saying much the same thing (e.g., as quoted in Czech TV 2010; TГЅden 2014). Existing legislation in other states—for enhanced palliative care facilities, a law on self-chosen death, or other—has framed the terminology entering the Czech debate and, interestingly enough, twisted it partly in

relation to what was known from other states. It is interesting to see, for example, that some Czech experts speak about France as having “passive euthanasia,” as does also Helena StehlГ-kovГЎ, president of the Ethical Committee of the Czech Medical Chamber (Czech TV 2013). The term “passive euthanasia” was also key in pushing legislation on self-chosen death onto the table in 2007. Boris Е ЕҐastnГЅ, while proposing together with Euthanasia–Good Death the Death with Dignity Law in 2007, emphasized that for all practical purposes passive euthanasia already legally exists in the Czech Republic, because many end-of-life decisions—including switching off ventilators and withdrawing feeding tubes—fulfill this function. The “passive euthanasia” term served as a support for the existence of “gray zone,” where patients’ needs are unfulfilled, indeed actually threatened. Euthanasia–Good Death has strengthened this argument through a story about a nurse hastening or helping patients to death (LidovГ© Noviny 2008). EDS used the “danger of passive euthanasia” as a warning that avoiding a discussion about a legal frame means hastening Czech citizens toward Page 185 →unwanted suffering or unwanted death. For that reason, Milan HamerskГЅ also insisted on distinguishing between “assisted suicide” and “euthanasia”—to incorporate the critique of those who see in euthanasia possible harm of the individual and possible conflict with doctors’ conscience. Although using the term “euthanasia” for the website materials, he speaks in his legal argument only about “assisted suicide” (LN, 27 August 2014) because it strengthens the role of individual (DVTV 2014). Interesting in this context, and crucial for EDS’s opposition to Homecoming, is the fight against “unofficial euthanasia” (interview CZ 13). HamerskГЅ pictures himself as having the courage and decisiveness to open the “famous Pandora’s box,” as he stated during the expert hearing in the Czech senate (DЕЇstojnГЎ smrt 2008). This will to confront the convention continued in public appearances after the law proposition failed in autumn 2008. Euthanasia–Good Death continued to gather information and support from politicians and public figures on the basis of this courage and decisiveness. It posted updates of the group’s activities at its website. And most importantly, it kept the debate alive by pointing to similar debates on laws on self-chosen death in Belgium, Switzerland, and Oregon and by using these debates as new triggers to bring the issue of assisted suicide onto the political table (interview CZ 10). “Let us wait for another two or three years” is, however, the statement of the Czech medical association, pronounced in the parliamentary debate by VladimГ-r BeneЕЎ, during the expert hearing in the senate over the law (DЕЇstojnГЎ smrt 2008). The waiting period implies that the international discussion is ampler and ahead of the state of the art in the Czech Republic. Experts note a certain degree of underdevelopment of the Czech institutions and unsatisfactory standards of care compared to other nations. Czech society, in their view, does not have the maturity to take up such a debate, so suggestions to delay discussion for a couple of years appear prudent. Other speakers invited to the discussion may subscribe to this line of argument because it gives them more time to refine their opinion, enabling them to retain an ambiguous position that encompasses the “need for better care,” the premise of dignity, and respect for patients’ autonomy. The topic of euthanasia reappeared in the media in 2014 due to the extension of the Belgian legislation on active euthanasia, but it made headlines mainly in 2016, when the new legal proposition on assisted suicide was put forward. The international references, as in 2007, reappeared as arguments and revealed the imaginary that triggered importing the issue into Page 186 →the debate and claiming the legitimacy of a point of view because it exists “out there.” “Experience from abroad shows that the time has come to acquire this form of death a place,”29 stated the law’s submitter, JiЕ™Г- ZlatuЕЎka, emphasizing that the proposition was also aimed at testing public opinion. This was timely, as according to the Center for Public Opinion Research (CVVM 2015), two-thirds of respondents expressed long-term support for legalizing some form of self-chosen death.30 However, the law has yet to get the support of the government or of the parliament. The law continues to be postponed, primarily on the grounds that it was put forward too quickly—and without thorough discussion (Stanovisko vlГЎdy 2016). To be unable “to escape the discussion,” as states the Czech journalist Petr Fischer in the introductory quote of this section, summarizes nicely the arena of actions and arguments that react to institutional disinterest in

the topic from 2007 onward. While Homecoming reacted through sustaining the expert community dealing with end-of-life care, EDS gathered supporters around an attempt to submit a revised law that took into account the growing awareness that there are other forms of good dying than “those stemming from the palliative care business” (website of EDS, 2014). Both organizations rely however, on the principle that it is necessary to talk about death and dying openly and comprehensively. Maintain the Status Quo until Intimacy Is Addressed A society that doesn’t have enough facilities to take care of dying people has no business discussing euthanasia.31 —Helena StehlГ-kovГЎ, president of the Ethical Committee of the Czech Medical Chamber, 2013 One of the most radical reactions to the advocacy for assisted suicide was the comment by the president of the Czech Ethical Committee, Helena StehlГ-kovГЎ, who emphasized the difference between the Czech Republic and European states that have some legal framework for end-of-life care. She made a clear link between insufficient care providers and the impulse for euthanasia. She was not the only one arguing along those lines (newsletter of Umirani.cz, November 2012). As the idea of reworking the 2008 legal proposition became public, many figures in the field of end-of-life care pointed to self-chosen death as an abuse and as a tragic alternative to insufficient care facilities. And Homecoming endorsed these concerns (Umirani.cz). Page 187 →Homecoming has been advancing its argument against self-chosen death based on protection of the individual from any redefinition of end-of-life care: “We warn against such sorts of law like the one that has been rejected by the Senate. We fear that such initiatives will recur in the future” (Umirani.cz, October 2008). This “warning” underlines the potential harm to an individual, who should be protected from “such sorts of laws.” The stated “fear” is articulated on the individual level by painting a picture of families that do not experience death as before but “thave a confused mind through the increased progress and medicine and have forgotten that we have to die” (interview CZ 20). The same kind of fear is articulated on the collective level, that is, on the level of a society that has exiled dying from the public sphere. Homecoming draws from that a common narrative that is directed against advocates for self-chosen death (interview CZ 8). We see this on Homecoming flyers about euthanasia: “Do we know what we are talking about?” Homecoming was supported by major religious institutions in the Czech Republic that proclaimed that euthanasia is actively assisting in someone’s killing. In this collective proclamation, Christians, Jews, and Muslims advocated what they called “dying with dignity.” This public support in the media promoted better inpatient care in health-care establishments, hospices, and at home (PA, 22 August 2007). Their discourse pointed out the necessity of keeping close to loved ones who are dying. Another example of this discussion is the proclamation of the Czech pro-life movement in August 2009 that raises the concept of home: Calling for euthanasia by the ill ones is a desperate call for compassion, for a moment of attention, for patience, for love. Calling for euthanasia by healthy ones is a fear of one’s own pain while accompanying the dying ones, fear of [being in a] quandary in the face of dying, fear of meeting death, and fear of a thousand other questions. The answer is therefore not death, but the presence of our fellows, softening of the pains, kind attention, and help for the spirit. (Prolife.cz, August 2009) Keeping close and listening carefully are depicted as automatically preventing someone from even having the wish for self-chosen death: “Calling for euthanasia is always a sign of hopelessness, the call for help—that we have to understand,” stated Marie SvatoЕЎovГЎ, then the director of the Czech Hospice Association (TГЅden, 25 July 2008). She bases the palliative association’s argument on the “loss of dignity” argument that she defends by presentingPage 188 → a figure of responsibility and expertise. The concerns about euthanasia are then addressed as concerns related to pain. According to SvatoЕЎovГЎ, because treatment for pain

is available, there is no need for euthanasia. Other experts confirm this (see DVTV 2014). According to SvatoЕЎovГЎ, a range of physician errors in care was responsible for prompting people to clamor for the choice of euthanasia (Czech TV 2007). Each of these elements in her argument supports the legitimacy of a fear of “loss of dignity.” EDS was quite logically characterized as “simplyВ .В .В . not know[ing] what they’re talking about” (interview CZ 20), an argument we know already from the French case, where the establishment dismissed the arguments of citizens who were advocating self-chosen death. Homecoming even depicted the submitters of the law as “immoral” and “irresponsible” people who wanted to conceal dying and “kill the elderly” (MF, 25 March 2007), and who positioned themselves against the teams of palliative-care workers. Marie SvatoЕЎovГЎ became even more radical in her reactions: “How can they pontificate about dying when they know nothing about palliative care?” (Czech TV 2014). But even as the issue of euthanasia became clearer through media reports and expert symposiums, the medical community continued to lack a unified view of euthanasia. Although many supported the argument about the “loss of dignity” and adhered to the notion of a responsible patient (interview CZ 1) who does not choose euthanasia or other forms of self-chosen death, there are also those who see the “loss of dignity” as highly problematic. The famous surgeon Pavel Pafko—the personal physician of former president VГЎclav Havel—who was involved in the debate on the Death with Dignity Law tried to anchor the debate outside of the medical environment: “I have to repeat that euthanasia is not a problem of medical doctors. Let us not be dependent only on their opinions. Euthanasia is about a solution to a basic philosophical question: whether we should or should not allow euthanasia” (RE, 14 November 2007). Not only does he point out the societal background of the debate, but he stresses the social dimension of the proposition of a self-chosen death. Other respondents from the medical community regard euthanasia as a social attitude: “I have been strongly against euthanasia, all my lifeВ .В .В . but I believe that there is a group of people who simply cannot cope with the idea of a life they cannot manage anymore.В .В .В . For those people, there should be an option to do it in a clear and regulated framework” (interview CZ 5). The discussion turned toward experts. The Ministry of Health Care Page 189 →worked—with the involvement of Homecomings’ experts—toward recognizing the specific status of end-of-life care in 2011. Although Homecoming was now finally being invited to comment on legal proposals, the situation remained far from satisfactory, as is widely acknowledged (newsletter, January 2016). Palliative-care units have not multiplied quickly enough, and a social security code for this type of care—which would enable families to get paid leave or state support for the care of their loved ones—is still pending. The main radius of action was seen in the awareness campaigns (e.g., Homecoming 2015). A media serial was put in place by the most-read daily, MF Dnes, called “UmГ-rГЎnГ- po ДЊesku” (“How Do Czechs Die?”), and Homecoming was one of the exclusive partners of that campaign. These stories reproduced the same narratives we know from the web but made them accessible to a larger public. A web portal, developed in the same way as Homecoming’s psychosocial support on Umirani.cz-mojesmrt.cz (mydeath.cz), made the link to the individual even clearer, collecting stories from famous public figures in the country about how they would like to die. The call to attend to the individual’s needs and to inform about these needs became therefore the main instrument—and the main virtue—of both Homecoming and EDS in the public discussion in that period. The Individual as a Device (and Burden) of Intimacy In 2008 Homecoming conducted a large survey to identify the inconveniences and needs of patients, physicians, and nurses dealing with dying.32 The situation was rather negative: of the 105,000 people who die each year in the Czech Republic, 75 percent do so in public health-care institutions. At the same time, 75 percent of respondents stated their desire to die at home. Most significantly, about 65 percent were dissatisfied with the state of the care either they or their loved ones received. Moreover, 60 percent of patients over the age of sixty-five deny wishing to live “on machines,” and 33 percent do not want to live with long-term pain.33 “People do not know what possibilities they have at the end of life. They just bring their loves ones to the hospital. They are there, where they do not belong. Their families are angry, everybody feels sorry for them, and for this situation, but

nobody does anything” (interview CZ 9). What is interesting for us here is the way in which Homecoming uses the lack of institutional action as a starting point for its exclusiveness and related domestication of intimacy but cannot surmount the inherent dispute Page 190 →over autonomy and dignity that accompanies that domestication. This is the reason why the nonprofit places its central focus on an acceptable place of death. Home, in its articulation, is the specific habitation of intimacy: it is opposed to an impersonal dealing with the individual. The quest for home raises simultaneously the questions of autonomy and dignity because the individual holds a different position in his or her home than in the impersonal setting of inpatient care. Homecoming uses individual stories to emphasize this unique and highly emotional context of home. This ranges from acknowledgments of posters to the organization’s website (“Thank you very much for your work, which helped me to attend my mother in peace and calm”) to interactions about difficulties, feelings, and wishes related to this care format (e.g., financial support during the period of care, washing or wound cleaning, side effects of pain medications, and concerns arising during the mourning process). Analogous to this home boundary, “autonomy” reflects the ability of the individual to affect in a more direct way how her care should proceed, and it means also that she is prepared to be co-responsible for this care. In opposition to that, the narrative of “dignity” draws attention to the fact that the engagement in care might become “impossible” for various reasons, such as economic or social ones, and the inpatient care setting is then to be seen as a paternalist reaction to the individual’s untenable situation. We see this in the way Homecoming deals with this subtle border through its role as a “visitor” to clients’ homes. Homecoming’s facilities promote the notion of autonomy because they mobilize self-governing techniques of the family, techniques that in fact offer the only way to cope in the absence of a legal frame. But encouragement of autonomy stops the moment the issue of a self-chosen death is raised. Self-chosen death is a nonstarter for the nonprofit, a position that is unambiguous in its informational material and in its training programs. One example is an advertisement for new staffers in which Homecoming emphasizes that candidates “must have resolved their relation to death and dying” (Umirani.cz, September 2008). Autonomy must respect dignity. In its lobbying activities after 2007, Euthanasia–Good Death also used the home as the habitation of intimacy. It refers to the context of personal consultation of the anxieties in the face of suffering and dying that are necessarily prior to a decision about assisted suicide. It took the Swiss organization Dignitas as a model, in which patients are in a room where relatives can visit them but are able to “say no when you change your mind.”34 Dignitas is Page 191 →settled in the nonprofit’s imaginary as an acceptable place to die because it can domesticate intimacy. EDS depicts Czech hospitals as “places where you never know what they will do to you and how they might hasten you toward a state you do not want to be in” (as one read in the introductory posts on the organization’s Facebook profile). The director of EDS, Milan HamerskГЅ, stated on several occasions that “more important than life itself is the freedom to decide what you do with this life. The old and the sick person should have according to him a вЂdecent opportunity’ to end his life” (DVTV 2014).35 Noteworthy here is the characterization of assisted suicide as a “decent opportunity,” again the friendly atmosphere that respects individual wishes and links with the idea of home. As we see, dissatisfaction with the policy situation on the part of patients, relatives, medical staff, and diverse civic and political networks goes beyond the critique expressed by Homecoming. Experts advocating for assisted suicide and stakeholders from Euthanasia–Good Death also criticize the lack of communication between loose networks of interested and concerned people with state authorities and institutionally established policy stakeholders. They claim that this lack renders a complex public discussion very difficult (interview CZ 10). They blame people advocating for end-of-life legislation for this and speak about them as “palliative businessmen, ” pointing out their connections with the pharmaceutics lobby (website of Euthanasia–Good Death, 24 August 2014). Interestingly enough, the same blaming comes from Homecoming, whose advocates fear that “laws such as these” (Homecoming 2008) divert the debate from the quality of dying. The media support the discomfort presented continuously by both camps as they report about the narratives of mourners and patients wanting to travel to Switzerland for euthanasia support or other people lost in the evil system of in-patient care,

both of which fail to meet the needs of patients. Increasing frustration with repeated negotiations on end-of-life care was mentioned by the actors of Homecoming on several occasions. “To push forward a legislation change on such a complex topic as dying within a ministry in which the minister herself has a life expectancy of some months is impossible. You go there, you present the project, you speak with the ministerial team, and within some months, you start from the beginning again” (interview CZ 8). Again, this feeling was not limited to this specific end-of-life choice but was identified by Euthanasia–Good Death people as well. EDS emphasized that the politicians “don’t care about the real problems of everyday life and keep death behind the door of a taboo” (the website of EDS, Page 192 →2012). In 2016, when the new law kept being postponed in the parliament’s agenda, the website saw this as a threat to dignity and as a lack of interest in what citizens want and need (MF, 22 June 2016). This was in fact the same tone Homecoming evinced. The concern with being an outsider evidenced by both nonprofits raises the question of how the individual and his or her emotional experience with dying—regardless of its ethical shape—can be embedded in any larger institutional context. On the one hand, the difficult position of being an outsider has functioned for Homecoming as a galvanizing device. By 2012, the Homecoming organization had succeeded in establishing its guidance activities, such as blogging, media reports, newsletter activities, and discussions with self-chosen death advocates in the media. These activities were further professionalized up to 2016, particularly in Homecoming’s support of the Center for Palliative Care. This large think tank would sustain knowledge about palliative care units and the possibilities of end-of-life care, thereby raising awareness among experts and laypersons. As an exclusive collaborator with this expert think tank, Homecoming now enjoys a particular status as an exclusive gatekeeper of the intimacy of dying. The fact that almost half of the beds in the public health-care system are administrated by private agencies and nonprofits36 indeed supports Homecoming’s exclusivity. What is more, analysis of media reports about this nonprofit during the observed period shows a very positive picture of Homecoming as a “pioneering” organization full of “impassioned” people (MF Dnes 2014; Respekt 2013; and others). On the other hand, the same advantage makes the organization’s political activities difficult. Homecoming’s activities are portrayed as repairing the state of the art, as those of a gadfly—as they put it themselves—not a real policy actor. Homecoming seems to ask for institutional support, as we observe in their reactions on the law on assisted suicide when they called for institutions to maintain the status quo. We have seen this also in their repeated concerns about the loss of dignity, articulated also through the fear of hidden practices, uncontrolled goals of care that are accompanied by miscellaneous media stories concerning the state of LDN centers (TГЅden, aktualne.cz, MF, etc.) or unethical care staff who deliberately administer overdoses to patients (MF, 5 June 2016; LN, 19 September 2016). Homecoming’s agenda within the Czech end-of-life debate presupposes, on the one hand, respect for patients’ dignity. To embed this presupposition in a health-care system increasingly concerned with “effectiveness” and “profitability,” which are repeatedly raised as rationales for Page 193 →the persistent lack of institutional embedding of end-of-life care, becomes problematic. The posture of dignity is then exclusive because it is available only to those who have resources of either money or time to ensure end-of-life care at home or through private networks. On the other hand, the same lack of an institutional frame sustains patients’ autonomy both medically and politically, requiring self-governing practices through which individuals must find their own way. This notion of autonomy means, however, accommodating the position of the individual, even if the latter includes the wish for self-chosen death. The autonomy then runs the risk of going against the concern with dignity, because dignity presupposes a stronger role for institutions that might contravene such individuals’ wishes, labeling their requests as “not really meaning this” or as an “act of desperation.” But it seems as if Homecoming would like to keep its position, because the will to have institutional support can at the same time be articulated as a “fear of standing alone,” mentioned in materials from the nonprofit’s information campaigns. This fear has been the galvanizing device for Homecoming’s philosophy, because it gathers people around the nonprofit and invites them to share their anxieties and acknowledge them

reciprocally—since they cannot be acknowledged elsewhere. The chief manager of Homecoming’s online initiative emphasized this explicitly when reflecting on whether the information service available at Umirani.cz could instead be provided by the state. “This would be too distant for the users,” she said, explaining how important it is for clients to know that all their information is handled discretely. Analogically, a nonprofit claiming exclusive access to those who are suffering at the end of life illuminates the burden of the institution that cherishes its exclusivity: an established state framework for end-of-life care would make Homecoming’s pioneering and special services to the dying a largely accepted practice. Homecoming’s activities directed toward the other ethical shore reveal how the nonprofit understands the conflict between institutions and individuals. The related debate in the media has shown that embedding intimacy within an institutional framing—no matter if for or against the idea of self-chosen death—becomes problematic because the nonprofit actors fear losing their bond with the individual. This underscores the difficult and tricky position of autonomy that needs some kind of institutional support in order to avoid the arguments about a slippery slope and misuse. Homecoming warned against an extended notion Page 194 →of autonomy and searched for a guarantee that autonomy will not run out of steam and that dignity can still be ensured. Here the notion of “autonomy” intermingles permanently with the fear of “loss of dignity,” with pain that has to be removed by someone else or a treatment that has to be provided by someone when the individual is no longer in a state to get it him- or herself. We have seen a similar balance in the context of the co-pay, which unmasked how the two values can clash, because what for one side is an expression of a patient’s autonomy in being able to evaluate when she needs a doctor is for the other side a harm to dignity because patients should be protected from such evaluations.37 Homecoming builds on a notion of intimacy that attempts to remain within the home context—outside the institutional—but still insists on protection if something goes wrong. There is no place for the individual who is autonomous enough to say how she wants to die but needs an institutional frame in order to have that wish implemented. Moreover, the institutional frame is in the debate both a gatekeeper against personal mistakes or the slippery slope, and also a potential perpetrator of harmethat could institutionalize patients or put doctors in the position of keeping them connected to machines when they no longer want to be connected. Homecoming’s role is located in tensions between individuals’ wishes and the modes of translating these wishes to general categories of good dying. If we look at Homecoming’s reaction to the other ethical pole, we see that the nonprofit also finds itself caught between the paternalistic logic of wanting institutional boundaries that ensure an ethical status quo and emancipatory varieties of death, such as dying outside inpatient care services. Its position reflects the fact that care operates at the boundary between emancipated patients who negotiate their own risks and obligations in response to their ideals concerning dignity, and patients who obtain their understanding of dignity from medical or other institutional authorities and try to comply with it. This struggle then returns us to the beginning: intimacy, by claiming exclusivity, makes institutional embedding problematic.

Conclusion The unsuccessful legal initiatives and policy advocacies pursued in the Czech Republic since 2001 could be seen as country-specific complications linked to postcommunist transformation. Homecoming’s struggle might just represent a failure of some sort of political marketing or lobbyist’s tools that have Page 195 →not pushed hard enough to get the proposition they want on the table. However, looking more carefully at the way the individual is perceived in the organizational architecture of Czech health-care institutions, and observing how the individual is perceived in the end-of-life issue itself, suggests that we search for a different explanation. Through the perspective of mourners, through the perspective of Homecoming’s work, and through the reactions of Homecoming on the other ethical pole of end-of-life issues discussed in the Czech Republic from 2007 onward, I have revealed that it was problematic to embed the intimacy of dying in an institutional context because the involved actors feared that intimacy would be deprived of its decent and essential character. The analysis shows that, at both ethical poles of the Czech debate, intimacy was presented as some kind of

supranational, universal value that should guide us toward good dying that would be accepted by the society. Both the mourners and the experts of Homecoming relied on such a notion rather than on concrete ideological or religious influences of the Czech postcommunist era. At the same time, while escaping the hard contours of an institutional framework, the intimacy of dying needs embedding within it such that tools and strategies can be put in place in the care for terminally ill so that they die well. The analysis of Homecoming’s image in the public debate and its reaction to Euthanasia–Good Death reveals that difficulties in mitigating the fear of institutions are not related to specific end-of-life choices but to the intimacy’s encounter with the idea of dying’s being embedded institutionallly. While establishing a “need” for an end-of-life policy, all advocates use the picture of the evil state institution as a galvanizing device that, supported by intimacy, gathers actors around their respective concerns related to end-of-life choices. Since 2007, both Homecoming and EDS have acted in a disorderly way based on their agreement on what they do not want, rather than on what they do want (interview CZ 5). Homecoming experts invite all who want to do something about dying to unite around its cause because the state is not dealing with it. In a similar way, the EDS’s proposition gives rise to the narrative that citizens are lost in the Czech state because they do not have the “freedom” to decide what happens at the end of their lives. The specific relationship between the individual and some sort of institutional bindings (legal frame, conventional practice, organizational culture, etc.) unmasks the difficult position of the nonprofit itself. Homecoming claims that the need is intimacy in dying, shared within a particular group of people, outside of state regulations, which fits perfectly in the postcommunist context of the end-of-life debate. Euthanasia–Good Death supportsPage 196 → this approach through its resolve to offer an exclusive right to those for whom the institutional embedding, the conventions that make assisted suicide illegal, makes their life unbearable. If, for both nonprofits, the state authorities are the ones not to be fully trusted, they are simultaneously those who are called to secure the ethical borders in order to protect the respective end-of-life choice. Intimacy reveals a paradox in this protection. The ethical arguments that both groups employ to argue for intimacy uncover the paradox of autonomy and dignity because these two values show the complexity and inconsistency of both ethical poles once we examine the day-to-day practices. An autonomous patient can be understood as the one who is responsible for the decisions she makes, including self-chosen death, and it is this autonomy that gives him or her dignity in the eyes of the advocates of self-chosen death. But what if the autonomous patient is also depicted as one protected from a hastening toward self-chosen death, who can have, indeed ought to have, a “certain quality of dying,” as the stakeholders advocating for better embedding of end-of-life care put it? The dignity, in this argument, is the warrant of patients’ autonomy, which could be in danger if the collective gives them the feeling that they are not actually useful. But for the other ethical pole of the end-of-life debate, this is precisely harm to human dignity, because the institution wants the individual to stay in a condition she no longer considers living in. In their call to revise the institutional designs dealing with the end-of-life care, the actors in the Czech controversy want to find a “home”—a legislative or an institutional one—for the end of life. Referred to as a place of respect, empathy, compassion, acknowledged as a space of intimacy where professionals and strangers can at most render a “visit” in support, home nevertheless opens a spectrum of negative connotations. Warding off fear and uncertainty about tomorrow and fatigue over the degradations of dying, meeting the need to find some clear guideline to the rage against that very guideline, home becomes a visualization of the paradoxical political situation of the intimacy of dying. As my respondents highlighted so many times: to experience dying at home can hurt you, yet it can also feel good. It may be full of rage and frustration, yet filled with the final peace of our loved ones. And it is through this paradox of an unwished-for, but necessary, visit by state authority that the political institution governs intimacy—no matter whether it stands by, listens, guides, swallows rage, or encounters it.

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Chapter 6 The Unbearable Politics of Intimacy The mediatized French cases of Vincent Humbert, Chantal SГ©bire, and Vincent Lambert exposed the uncertainty of how to regulate the end of life because they kept pointing toward polarized public opinion around the end of life, reopening debate that state authorities thought would be sealed through carefully elaborated democratic decision-making procedures. These cases were extremely powerful in their capacity to offer the figure of a suffering patient framing the notion of “good dying” more authentically than references to cultural values or national traditions would do. The emotional experiences related to the appearance of all these cases in the media significantly influenced the structure of the French political debate because they fractured the French civic values libertГ©, fraternitГ©, and Г©galitГ©, and in a quest for the redefinition of these values, both advocates for euthanasia and its deniers have used intimacy to support their particular view of “good dying,” yet aspiring with the help of intimacy to a universally valid view. The same central place of the intimacy of dying in the end-of-life debate was advanced by the Czech nonprofit Homecoming, as it built not on any national narrative but instead on human closeness and respect for that closeness as something superior to any ideology, culture, or expert opinion. Analysis of mourners’ narrations reveals that intimacy becomes in fact a sort of expert opinion that guides these persons in the world of ambiguous values and unclear conditions of care of the postcommunist transformation. To rely on intimacy, and to advocate it as “evidence” of good dying, as revealed by the analysis of the larger context of the end-of-life debate in the Czech Republic, develops into a strategy against claims made mainly by EDS, that self-chosen death legislation exists abroad and should be integrated into the country’s policy, where medical developments have reshaped the role of individualsPage 198 → and society so that ethical arguments can also be reshaped toward accepting the idea of self-chosen death. However, this is only one part of the end-of-life story, because intimacy, by offering a way to accommodate emotional experience with dying in the actions of political institutions and by giving arguments and communication tools to these institutions, was simultaneously revealed as the reason the same institutions face difficulties in maintaining power and closing off the end-of-life controversy. Both end-of-life cases revolved around conflict over who knows what the end of life is about, and the emotional experience with the end of life was fundamental in defining this knowledge. That knowledge has been constantly reconfigured depending on the dynamic that intimacy brought to the debates. The politics of intimacy, in both cases, was a galvanizing resource for the political will to redesign the ethical and cultural status quo and has gathered actors around particular notions of intimacy to constitute a coalition. Such coalitions are nevertheless revealed to be rather fragile in the long term because the intimacy boundary vanishes every time the institution decides to acknowledge the notion of intimacy from the other camp and to accommodate it in some way through a policy. If the French debate was initially framed as a conflict between “uninformed citizens” and the enlightened institutions that shut the lid on the Pandora’s box of legalizing euthanasia, as attempted by the Leonetti Law in 2005, the roles reversed as the debate developed, and as the Sicard Report approached and accommodated citizens’ emotional experiences in 2012. At that time, the expert community—until then loyal to activities of the government—began to criticize the government’s initiative of including citizen conferences by using the same arguments as had previous public initiatives. These public initiatives in particular contended that the government was disregarding the dual facts that dying is highly individual and diversified, and that one cannot make a just and equitable law based on the input of sixteen people from a citizen conference. This argument about diversity of the collective versus individuality occurred although experts had criticized the use of the same argument by nonprofits, advocacy groups, and the media as “irrelevant” or “irrational.” Their attitude exposed the actual conflict between the individual and collective dimensions of dying we discuss here through the metaphor “politics of intimacy.” Through the Clayes-Leonetti Law, French political institutions tried to adopt the posture that “talking about it” was in fact a form of policy because as long as the public

Page 199 →could discuss it, the French people would have the impression that intimacy was being accommodated. In parallel, in the Czech Republic, the roles between institutions and individuals were reversed because state institutions were described as those who do not know that end-of-life issues are pressing and were therefore seen as “implacable” because they were unable to accommodate emotional experiences with the end of life. At the same time, mourners taking care of their loved ones strayed in the system: even if they had knowledge about the end of life, about what they wanted and were working toward, they were unable to translate this knowledge into concrete steps because of the lack of institutional support. Homecoming, while trying to bridge the gap between the two, was also unable to solve the conflict. The more the nonprofit insisted on the individuality of intimacy in death and dying to satisfy its clients, the more apparent it became that translating its steps into a state policy would rob the imagination of an intimate partner and of the spontaneous and informal bond that the nonprofit’s philosophy incorporates. Furthermore, Homecoming’s reactions to the arguments of Euthanasia–Good Death showed that both organizations were in fact domesticating the intimacy of “good dying” and, by doing that, rather than acknowledging the emotional experience with death and dying of each citizen, Homecoming and EDS used the universality claim to create room for what each organization saw as the authentic emotional experience with death and dying. This posture showed the fragile, and quite impossible, existence of the acknowledgment of the emotional experience as the foundation for a policy on the end of life. The present reflection therefore embraces two objectives having larger consequences for our understanding and imaginations of politics. First, it shows that the end-of-life controversy should be rethought in terms of what it says about how governments, medical professionals, patients and their loved ones, and nonprofits cultivate the boundary between the individual and the collective that constitutes legitimacy for their respective actions. End-oflife controversies reveal the fragility of liberal democracy, uncovering “zones of negotiation” where both established hierarchies and actual power relationships contact the social and emancipatory forces of individual requirements, engagements, and responsibilities. Public power operates through acknowledging and not through traditional decision procedures, but this is what makes it so oppressive, heavy, controversial, even scary. The Page 200 →deadlocked dynamic, with ambiguous outcomes, leads us to the figure “politics of intimacy.” The second objective of this reflection was to raise the concern that such rethinking of the end-of-life controversy lays bare the state as a crafted agenda, in that intimacy plays an important constitutive role, no matter what kind of solutions are being proposed and what kind of actors propose them. Both layers of this crafting have been integrated in the analysis: the individual and the collective. The historical arguments and narratives related to political debates on end-of-life issues around the world have shown us that the development of the discourse on “good dying” has been reshaped through interaction of the expertise with what becomes acknowledged as that kind of expertise. Death and dying, while establishing a social order, simultaneously destroy this order by bringing the individual experience to the daily life of a collective—be it the family, village community, city, or the state. Discourses on the end of life and the emotional experience these discourses coproduce are not just addons to actions of political institutions; instead, these discourses both constrain and enable governing processes.

Controversies without Borders End-of-life controversies do not respect national borders anymore. The possibility of being compared with another state by the media, stakeholders, or activists affects the way state authorities deploy their argumentation. All actors relied on emotional experiences of death and dying as a way to react to this global context and embrace it. Through their impact on the emotional experience, values of dignity and autonomy have served as support for both self-chosen death and enhanced palliative care and at times have excluded each other in particular end-of-life debates. This was the case in the Czech discourse on individualized care that, on one hand, supported individual autonomy but, on the other hand, warned the individual against the possibility of self-chosen death and exercising an individual’s autonomy regarding death and dying.

As common cultural and ethical values become ambivalent with respect to the discussion and the knowledge that circulates in end-of-life controversies becomes diverse and often contradictory, intimacy is used as an argumentative tool, a guiding evidence, that indicates which development of the Page 201 →society is the “right one.” The analysis of intimacy thus goes beyond the question of which of the end-of-life choices is more likely to accommodate emotional experience with death and dying. This is not the issue here. While intimacy stands above cultural, historical, and political arguments to become a discursive tool for such arguments, it is precisely this dominant role that creates further problematizations of politics. French and Czech analyses show us that both debates are in fact controversial because, in both, the political institution appears as a phantom that obliges the individual to do something and yet seems not engaged in this decision. If the state authorities take the paternalistic pathway, the individual becomes caught in a solution where she no longer expresses intimacy. If these institutions aim to take the autonomous pathway and allow diversity in dealing with the end of life, they are criticized for being in a “gray zone” where they do not ensure dignity. What arises from these dynamics is the muted nature of public power that governs by acknowledgement and by replacing territorial boundaries with emotional ones. End-of-life controversies remain open because they continue to be triggered by new impulses of speeches at international palliative congresses, public requests from dying patients, and criminal trials for physicians who have acted outside of what the legal situation allows them to perform on patients at the end of life. Against any emotional experience with the end of life stands another one, confirming it or heading resolutely in the opposite direction. Per definition, political institutions run the risk of being inconsequential. If they want to follow and treat these experiences as individual and unrepeatable, they have to decide on a case-by-case basis, and then not necessarily in the same way. If they do that, however, they do not provide a frame that would enable people to feel on more solid ground—as we see in the responses of both patients and medical experts. These emotional borders show us how the comparison should be understood in this book. The Czech and French case studies differ in terms of cultural and ethical contexts in which the controversy takes place. But in both cases these contexts are not the driving forces of the debate. French and Czech nonprofits deploy their argument about implacable political institutions, although they do not fight for the same ethical end-of-life choices, so their concern about the impossibility of acknowledgment of the emotional experience is not linked to any specific endof-life choice. Moreover, although the French health-care system has, compared to the Czech situation, many palliative-care units and settings where end-of-life care is practiced, Page 202 →this does not really eliminate concern about the disparity between the intimate face of death and dying and the difficulty collective institutional settings have in embracing it. Intimacy almost seems to intervene against cultural and sociopolitical contingencies of Western societies. First, both countries debate the end of life under the sign of revision of “cultural” references, the legitimacy of which is carefully debated by political institutions. Such debates integrate some references to the preservation of the tradition, but they highlight especially the need to redesign these traditions according to recent developments in science and health technologies. In this quest for a solution, intimacy appears as a vector to orient this amalgam of various arguments. Second, the ethical values of dignity and autonomy are given a prominent place in the discussion regardless of whether they concern self-chosen death or legislation on advancing end-of-life care. Analogous to cultural references, these values are debated in terms of how to ensure adherence to them—or, better said, to innovate them—in developments in both medicine and society. Again, intimacy serves as the compass to define these values. If intimacy is the compass to politicize, regulate, and govern the end-of-life controversy across traditions and cultures, and it is the template to understand intersubjective engagement of human beings, can it teach us anything on how to govern in the increasingly globalized and cosmopolite world? Are we in fact ready to embrace the challenge posed by the recognition of individual rights by the collective values we need and want to support our social orders? The universality of the emotional experience, staged by policy actors in both cases, speaks to the question of recognition of the multiplicity of rights and values and their diffusion across different societies, an issue reaching beyond death and dying and becoming one of the current research agendas in international political theory (Brincat 2010, 2016). As global identities become more and more common and frequent in political

discussions, an investigation of transnational emotional experience becomes crucial to understanding discourses that are coproduced within these developments as well as to developing responses to them. Acting and acknowledging transnationally transposes the main keywords of end-of-life debates, “home,” “autonomy,” and “dignity,” to the general question of mutual recognition of human beings in a democratic society. With that the democratic challenge is tied to the quest for an institutional framework in which intimacy could operate. How is such an institutional framework possible? Does it not run the risk of losing steam or of provingPage 203 → the slippery-slope argument? These are rhetorical questions that we hear from all involved stakeholders, and also from publics all over the world. However, as we see, intimacy is behind the curtain of home, dignity, and autonomy both to support them and to problematize them. Autonomy rises as the democratic consequence of the endowment of conscience and reason but fades away when it comes to acknowledging emotional experience because this would require a subtle balance with dignity. Dignity, while being advanced as both a paternalistic action by institutions providing security and as a self-governing practice, also comes into conflict with autonomy. Home, as an articulation of the harmony between both values, reveals a specific habitancy of intimacy, which means that it necessarily incorporates all its contradictions outlined in this book. With that dimension, the politics of intimacy not only visualizes the problem of communication of highly emotional experience, but shows also the tricky character of accommodating acknowledgment of that experience in liberal democratic regimes. “You don’t know what you are talking about!” as a reaction to any accommodation of intimacy in actions of political institutions seems to be a crucial claim, revealing that intimacy is exclusive, incomparable, unrepeatable, and therefore also ungovernable.

Toward Redefining Political Rationality Reaching beyond death and dying, the conflict raises the question crucial for political science: how citizens identify themselves with a collective, and how they articulate their support of and demand for revision in that collective. The tension between nonacknowledgement and the promise of it is recurrent in current liberal democracies—and end of life seems to be only one example. Most contemporary populism is driven by this call for acknowledgement, covered often in a demand for repairing the damage in the name of “people” (including their emotions). The prominence of such a call beyond the death and dying area might indicate that the fear that institutional framing always ends in deadlock is inherently related to the way modernity has imagined politics and the way modern governments have designed and argued for some generally accepted ascendency of political rationality. This leads us to the nature of policy situations in the French and the Czech cases. The politics of intimacy is not limited to particular stages of policymaking. Whether the law is formulated, evaluated, or implemented, Page 204 →or whether the policy actors open the discussion to get the issue onto the political table, intimacy becomes the tool all the actors bring to their arguments and try to accommodate in their particular policy suggestion. In all the policy situations observed in these two cases, the concern of intimacy exposes at the same time its impossible incorporation in the foundation of political institutions. Both cases studies have stressed in that way the role of intimacy in all three stages of policymaking. First, policy issues were conceived and defined in relation to the expression of emotional experiences the actors transferred or articulated during the debates. Second, the emotional experience influenced the polity, mainly the repartition of responsibilities among actors and the way these have been organized within particular policy formulations and policy implementations. Both policy and polity affected, third, the way politics was performed in the two countries. They consolidated specific institutionalized practices going beyond the sole differentiation of being in favor of or against legalizing self-chosen death, but brought forward the issue of how intimacy is dealt with within the institution’s governing process. This back-and-forth dynamic was then found to be a symptom not of the controversy’s winding down, but of its character and thereby the core of this controversy. The fragile political dynamic redefines the common notion of political rationality that has held separate the

rational and the emotional parts of arguments and actions and that has relied on clear contours between individual and collective experiences. However, we see here two cases where the politics of intimacy frames which knowledge counts as the right one or the relevant one; it also governs the way knowledge is shared and, especially, who shares it. In this way, intimacy reorganizes the responsibilities within political actions because it makes the individual and collective aspects a, rather conflicting, boundary. It brings the political establishment into a different relationship with citizens, because citizens require “acknowledgment.” The politics of intimacy seeks a reorganization of health institutions that would encompass changes to the medical establishment because the patient requires “support.” It creates the political need to deal with end-of-life issues that we have seen articulated through narratives on a “slippery slope” or “loss of dignity” and through incorporations of “suffering,” “healthy,” “experienced,” and “ignorant” individuals. Speaking about the politics of intimacy then implies identifying conditions under which an issue is perceived as a pertinent, or relevant, matter of political negotiation. Both cases show the importance of empowerment of Page 205 →the individual and reveal the analogy we can draw between the position of the patient and the citizen. The aspect of empowerment is important here because it discloses the governing process by which an issue becomes a pertinent matter through the boundary between the individual and the collective or, as we put it earlier specifically for the end-of-life issues, through the boundary between the intimate and political faces of the end of life. The boundary touches upon the ways in which the individual presents his or her requirements. The requirements related to the end of life are translated into pictures of “suffering patients” as much as they are performed as “expert dilemmas” of hospice staffers and palliative-care professionals. The French debate highlights the aspect of citizen empowerment in the discussion around the Sicard Report, which is similar to the discussion of both Czech advocates—Homecoming and Euthanasia–Good Death—where the issue of citizen empowerment is finally framed as a conflict between autonomy and dignity. I have deliberately relied on a policy issue that is commonly perceived as “inexpressible” or “emotional” and that many respondents and stakeholders identified as one that is not readily compatible with language. Within the register of negotiation, I opened the notion of language toward power, emotions, and therefore also toward the notion of politics. To focus on the process of how public power seeks to give voice in the policy procedure to intimacy and to display it as relevant to those who are in power offers a novel perspective on politics because it focuses on acknowledgment as a tool of power and includes henceforth emotional experiences as integral parts of political rationality. If emotional experience strikes at the understanding of the nature of the issue (policy) being discussed and regulated, thereby affecting the structure in which it is discussed (polity) and the reconfiguring mechanism by which the issue is regulated (politics), then it redefines the common notion of political rationality. The recurrent problem of accommodating intimacy in the end-of-life controversy presented in this book visualizes how the relationship between individuals and institutions reveals the need for redefinition of political rationality. Individuals and institutions have taken a path from a vision of a liberal democratic world toward a controversial mode of that vision, as accommodating individual rights and collective values has become tricky and far too complicated in the light of the constant rise of participatory engagements of citizens, plurality of knowledge, and controversial opinions of experts. The politics of intimacy joins here the debate on the consequences of democratic innovations, in our case more specifically the terrain that has Page 206 →been opened to state authorities and other stakeholders with the inclusion of emotional experience in political negotiations. The politics of intimacy thus remains a double-edged sword: the more it governs through miscellaneous meanings and engagements, the more it is governed by and subjected to controversy. This deadlocked character visualizes the limits of public power that Michel Foucault tried to convey through biopolitics. The politics of intimacy can be seen as the end of a biopolitical paradigm of public power. The institution fails in “making live” because—even if the Western health policy has put into place practices and instruments to fight disease and death—death remains the logical, inevitable, and natural outcome. The institution fails simultaneously in “letting die” because it does not let patients go, as it must fight the disease until the very end. It is not only the moral constraints developed throughout Western history that prevent states from “letting die.” It is also the basic requirement of the liberal democratic regime, through which individuals demand state policies that

protect them from harm. However, when the demand for protection enters the arena of an ultimate sphere of dying, that is, the arena of intimacy, it can easily become labeled as an irrelevant paternalism. To veer away from that paternalism toward empowerment could, in turn, easily become a loss of protection. The state can at its best create a condition for its citizens in which they can live out intimacy: in doing so, it has to accept deadlock as the intrinsic legitimacy of its existence.

The Politics of Intimacy as a Case for Reflexive Analysis of Politics After reading my manuscript, one colleague told me that he still remembers how, after suddenly and unexpectedly losing his father after a routine operation, he had to find father’s military card so that his mother could receive a widow’s pension. He laughs bitterly about it today, how this search dominated his days of grief as it represents to him a cynical picture of the intimacy of dying running up against an institution. While anticipating and preparing for our eventual death or the death of our loved ones in our spiritual as well as daily lives, we find ourselves feeling uneasy, silly, and useless because death and dying escape any of our attempts to tame or time them, or to grieve peacefully. At the core of this uneasiness, intimacy influences the mode through which we address it as a policy issue and through which we Page 207 →organize the related social hierarchy. If this process has been iteratively referred to as a negotiation, and if this book has emphasized interpretation as path to understand the discursive registers of this negotiation, to include the role of the researcher and her emotions is a next logical step to integrate this uneasiness of intimacy. Telling the story of end-of-life policies through the lens of intimacy makes it an epistemological paradigm of inspecting politics, thereby opening the interpretive analysis toward a diversity of knowledge and experience in world politics, and with that, making a case for a close relation between reflexivity and interpretivism as one of the upcoming cornerstones in the analysis of global social problems, both in IR and comparative political sociology or policy studies more generally.1 The will to aspire to a universally valid knowledge that has been highlighted by all actors in end-of-life controversies can be found in any other political debate on values. A reflexive interpretive analysis can understand how this will gains legitimacy or gets rejected. If the end of life is full of stereotypes, full of myths and truth claims, these elements are nevertheless combined with scientific facts, demographic statistics, and economic indexes to create together a discursive register that holds the issue of the end of life together as political issue, that makes it relevant for policy debate. Not only is the knowledge important, but these different discursive registers are also important for understanding the dynamic that intimacy brings in. Both cases have therefore been addressed through the interplay of the contexts of meanings, the voices through which these meanings are communicated, and the modes of how they are shared. This enabled us, first, to understand the dichotomy of euthanasia positioned against palliative care as a discursive register. Both discourse camps used the same contrast between “healthy ones” and “suffering ones” that was simultaneously a contrast between “ignorant citizens” and “experienced experts.” This conflict line shows that neither the Czech “ancient regime” between 1948 and 1989 that had installed a paternalistic structure of decision-making nor the French political culture—the tradition and solidity of which has been demonstrated in national surveys as well as by the respondents during my inquiry—can be made solely responsible for the endof-life controversy. The second discursive register the analysis showed was the dichotomy that old and new actors used to argue for their respective positions. In the French case, the conventional practice of politics was contrasted with the highly emotional parliamentary debate during the 2005 vote on the law, especiallyPage 208 → during the initiatives for its 2007 and 2008 revisions and again during the discussions around the Sicard Report in 2012. The interpretive analysis enabled to outline the end-of-life controversy as a conflict between the French political establishment and the French public, a conflict that challenged the conventional wisdom on rational political argumentation. In the Czech case, the nation’s conventional in-patient care practice was contrasted with the alternative setting of a care that establishes “home” without leaving individuals completely alone; the conventional view of the citizen as an uninstructed “protГ©gé” was contrasted with discourses on autonomy and self-regulation. The analysis revealed a conflict between the aim of protecting the individual, assuring her dignity, and giving her a chance to be emancipated and to make an autonomous choice.

Governing through meaning—a mantra of interpretive approaches to politics in general—should be therefore extended by the analysis focusing on how these meanings are shared, by whom they are shared, and by whom they are not shared. By assigning a pivotal role to the acknowledgment of emotional experience as a tool of governing processes, I suggest here that we do not speak about governing through meaning but rather governing through intimacy to highlight the role of emotional experience for the production of knowledge within a policy. Meanings can change according to the way they are shared among actors. This shifts our future analytical focus from the meanings themselves to the way we share them: as mourners, friends, stakeholders, and political scientists.

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Terminology Active versus Passive Euthanasia As stated at the “Voluntary, Involuntary, and Nonvoluntary Euthanasia” entry, types of euthanasia can be distinguished according to the practices that lead to ending someone’s life. Among “active” measures are oral medications, lethal injections, and barbiturates that result in immediate death. Defining what constitutes “passive” measures is more problematic because the distinction between what is an active measure and what is a withholding of a treatment often remains unclear. Withdrawing a feeding tube, for example, is an active measure that stops a treatment (Keown 2000 and 2003) and can be thus regarded either way. Many ethical sources reject the distinction between active and passive measures, claiming that physicians will always be actively involved in the decision, even if they decide to refrain from a particular treatment (see, e.g., Ethics in Clerkships 2014).

Assisted Suicide “Assisted suicide” is a more recent term to describe an act whereby a third person deliberately helps, or “assists,” the person who wishes to end her life (the first law prohibiting assisted suicide was enacted in the New York State in 1828). The definition and description of assisted suicide vary in the sources. Some see “assisted suicide” as synonymous with “euthanasia” (e.g., the blog of the Department of Medical Ethics at the Chicago College of Medicine 2014). The Swiss organization Dignitas, which provides assistedsuicide services, prefers the term “voluntary death” (Freitod in German) (Dignitas Page 210 →2014) and describes it thus: “In the case of medically diagnosed hopeless or incurable diseases, intractable pain or intolerable disabilities, Dignitas offers its members the possibility of accompanying voluntary death” (Dignitas 2014). The Oregon Health Authority, which reports on and administers the Death with Dignity Act, which has been in effect in that U.S. state since 1994, defines assisted suicide as an ending of a life “through the voluntary self-administration of lethal medications” (Oregon Health Authority 2014). The Eubios dictionary, web dictionary of the Eubios Ethics Institute, which is supported by the International Bioethics Committee of UNESCO, defines it as a “provision of information and/or the means to enable a patient to take his or her own life” (Macer 2003, 7).

Dehydration Medically known as hypovolemia, dehydration is generally an excessive loss of body fluid through vomiting, diarrhea, excessive urine production, or other causes. In the end-of-life domain, “dehydration” refers to the “inadequate intake of food or fluids” (Pallipedia 2014), which is considered one of the signs that the patient is in extremis (Guidelines for Nurses 2009). The online encyclopedia on palliative care, Pallipedia, specifies that “if the patient is still taking some fluids but not eating, salt-containing fluids, such as soups, soda water, sports drinks, and red vegetable juices can facilitate rehydration, and help maintain electrolyte balance” (Pallipedia 2014). Dehydration has become a key issue in end-of-life decisions as one of the withholding treatments (for details about withholding treatments, see, e.g., Seale 2006). Especially in the Dutch context, the practice has been introduced as an alternative to euthanasia (see the controversy on versterven in Pool 2004).

Hospice Hospice services are generally understood to provide both palliative and general care for terminally ill patients (see also Macer 2003, 235). Hospice care includes professional health care, home visits, emotional support for the family, and physical care of the patient (see also Clark 2003 and SlГЎma 2008); services may be provided in a hospice center or at home (home hospices for the latter). The International Association for Hospice Care and PalliativePage 211 → Care defines palliative care as the satisfaction of both the physical and the emotional needs

of patients (IAHPC 2014; see also De Lima et al. 2012). The American Cancer Society emphasizes that meeting patients’ emotional needs is necessary to ensure good quality of life: “Hospice care focuses on quality rather than length of life. It provides humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible” (American Cancer Society 2014).

(Medical) Futility This terms refers to the uselessness of specific medical interventions in preventing the patient’s death (see Macer 2003, 197). The complexity of the term, and variations in classifying a treatment as “futile” in different contexts, reflect the very core of the end-of-life controversy in the palliative-care domain. Whereas some physicians may view resuscitation or reanimation as futile, others will continue to apply those efforts (see, e.g., Seal 2006). It is therefore necessary to consult the specific legislation of a particular country or review the particular medical practices suggested by medical codes or legislation.

Palliative Care Palliative care is not “curative” and has but one aim: to alleviate pain. Bernatzky specifies that palliative care is a practice at the terminal state of the life, the main purpose of which is to moderate the social, psychical, and physical pain of the patient who has been deemed “incurable” (Bernatzky 2006). Proclaiming it a human right (EAPC 2010), the Prague charter of palliative care strives to promote European national legislation that will include palliative care both in the public health system and in social security.

Palliative Sedation (or Terminal Sedation) The Eubios dictionary indicates that the first use of palliative sedation was in the early 1980s. It is also known as the “deliberate termination of awareness” (Macer 2003, 447). James Kennedy, in his historical analysis of how the Page 212 →Dutch moved toward euthanasia legislation (Kennedy 2001), speaks about palliative sedation as a way to simulate the natural dying process in the technological epoch. In the vocabulary of public health professionals, terms such as “terminal care” and “end-of-life care” are synonymous with palliative sedation insofar as these care settings correspond with the philosophy of palliative sedation and are, so to speak, the hospital settings in which practices of palliative sedation are performed (Macer 2003, 19, 447).

Physician-Assisted Suicide This term is problematic, to a certain extent, since the idea of a physician deliberately involved in the end-of-life decision runs contrary to many of the codes of medical ethics. For example, the American Medical Association states in its code of ethics: “Permitting physicians to engage in euthanasia would ultimately case more harm than good. Euthanasia is fundamentally incompatible with the physician’s role as healer, would be difficult to control, and would pose serious societal risks” (Code of Medical Ethics, 2.21). The Eubios dictionary defines physician-assisted suicide as “the taking of a lethal drug provided by a doctor for the purpose of ending the life of a terminally ill patient” (Macer 2003, 300). The dictionary further raises the issue of reduction of human suffering that often occurs at the end of life, especially with loss of some functions and other changes in the patient’s body and mind and emphasizes the dilemma in medical ethics that concerns the assistance and participation of doctors in self-chosen death. A breach of the Hippocratic oath is considered as grave as a breach of patient autonomy. Some sources see “mercy killing” as synonymous with “assisted suicide” (Faull et al. 2012; Vaux 1988). The legal discourse treats “mercy killing” as a term that encompasses various forms of the deliberate choice to end a person’s own life (Dworkin 1994; Narbekovas and Meilius 2003; Pence 1988). The term “mercy killing” does not appear in the two case studies analyzed in this book, because neither French nor Czech has an equivalent term.

Prolongation of Life The Eubios dictionary defines the prolongation of life as any use of “therapeutic measures to prevent or delay the death of critically or terminally ill Page 213 →patients” (Macer 2003, 373). This topic is complex, since there might be contexts and situations in which the same kind of treatment may or may not be classified as prolongation of life.

Release from Suffering Some medical practices refer to “release from suffering” to indicate pain-lessening measures, especially in palliative care settings.

Unnecessary Suffering The suffering of a patient in general is seen as unnecessary when the treatment is repeatedly applied but does not slow the development of the disease or improve the state of the patient’s health. Opinions differ on what therapy or practice constitutes “unnecessary suffering” because improvement is not evident and because the patient’s quality of life would improve if she were not subjected to the pain related to that practice or therapy. Ethical considerations differ according to particular situations, and the classification differs from country to country.

Voluntary, Involuntary, and Nonvoluntary Euthanasia If “euthanasia” is generally understood as the practice of bringing about another’s death in order “to end that person’s suffering” (Lindsay 2013), it is necessary to look at the specific steps of that practice, specifically the means used to end the life. It is just as necessary—and this is the main point of view in legal theory (Koller 1993)—to focus on the will of the person who decides to die. The Eubios dictionary specifies that euthanasia be classified as “involuntary” if the ending of the life of a patient who is suffering or is afflicted with an incurable disease or condition is done—still for reasons of mercy—without that person’s consent (Macer 2003, 261). Peter Koller (1993) requires a further distinction in cases in which the person’s medical condition no longer allows his or her will to be determined (especially for a person in a coma). He therefore distinguishes between “nonvoluntary” euthanasia (e.g., the person in a coma) and “involuntary” euthanasia (i.e., euthanasia performed against the will of the person) (Koller 1993, 65). Page 214 →In legislation, however, practices of euthanasia—as seen in the Netherlands and Belgium (see studies on those countries: Pool 2003 and Carpentier and Van Brussels 2012) can result in ad hoc diversification in the separation between “passive” or an “active” euthanasia. For example, Dutch legislation allows active euthanasia only under strict conditions, for example, only at the patient’s request, and at the time of the medical decision to comply with the patient’s request, the patient must be conscious (see also Macer 2003, 414). In Belgium, however, this debate has recently led to a notion of “euthanasia” performed on comatose patients and on neonates (see Daily News 2013 and Andrew et al. 2013).

Withdrawal Withdrawal refers, in most cases, to the withdrawal of the mechanical ventilator to which persons are often connected when they have fallen into a coma or vegetative state. This common practice involves the medical staff removing the endotracheal tube through which the patient is connected to the ventilator; patients are then left on their own, so to speak. Therefore, after the ventilator has been removed, the care staff generally transitions to palliative care. As Pallipedia puts it: “In all settings after withdrawal of mechanical ventilation, health care providers should continue to titrate opioids and benzodiazepines to maintain satisfactory control of any signs of discomfort” (Pallipedia 2014).

The term “withdrawal” can also apply in a discussion of the withdrawal of a patient’s feeding tube in cases in which the patient refuses to eat for other than medical reasons, mostly because the dying process has started. In comatose patients, withdrawal of the feeding tube can be a passive measure to hasten the end of someone’s life (see, e.g., the case of Terri Schiavo). The measure can generally be defined as an ambivalent one, reflecting the double threshold of modern medicine, which—while advancing certain possibilities to heal and to prolong life—might indeed prolong suffering (see the discussion in Locke 2002).

Page 215 →

Notes Introduction 1. Regarding groups of publics, see also Bevir 2009; Bevir and Rhodes 2010; Colebatch 2009; and Hajer and Wagenaar 2003; regarding international actors, see Bosco 2014; Sasley 2014 and 2011; Wolf 2012; and others. 2. As argued, for example, in the poststructuralist theory of state: Brown 1995; Braidotti 2006; Howarth 2010; Hay 2006; Mouffe 2005; and Norval 2009, 2012. 3. Among these studies are Fassin 2009; Gottweis 2003; Haraway 1988; Memmi 2004; Nettleton 2000; Novas 2006; and Rose 2001 and 2007. 4. While emotions have become an object of study of many social science approaches, this book relies exclusively on the discursive shape of emotions because this tradition enables us to capture the role of emotional experience in interactions. I discuss in chapter 2 more specifically how the theory of emotions enters the investigation of a policy regime through the lenses of intimacy (for the debate see, e.g., Ahmed 2004; Gould 2009; Hochschild 1998; Hunter 2015; Jupp 2016; Lash 2007; Nussbaum 2001; Stenner and Taylor 2008; Stenner, Barnes, and Taylor 2008; Tapolet 2000; and Zelizer 2005). 5. I discuss the larger spectrum of the discussion on emotions in chapter 2. An overview of the debate can be also found in Jasper 2011 and Dixon 2012. 6. I discuss the interpretive turn in policy studies in chapter 2, building mainly on the following works: Fischer 2003 and 2009; Gottweis 2006a and 2006b; Hajer 2005; Glynos 2008; Norval 2009; Yanow 1996 and 2006. 7. See further this discussion in international political theory (Steele 2013) and political sociology (Stoeckl 2016). 8. Discussed in detail in chapter 3, the analytical scheme relies mainly on the following works: Adam 1999; Amossy 1999; Charaudeau 2000 and 2005; Ducrot 1972; Maingueneau 1998 and 1999; Kerbrat-Orecchioni 1999; and Rinn 2008. 9. See DurnovГЎ 2011; Gould 2009; Jasper 2011; Kleres 2011; Stenner and Taylor 2003; and Stone 2013. 10. See Adam 1999; Amossy 1999; Charaudeau 2000 and 2005; Ducrot 1972; Maingueneau 1998 and 1999; and Kerbrat-Orecchioni 1999. 11. See Yanow and Schwartz-Sea 2006; Torfing 2005; Wagenaar 2011; and YanowPage 216 → 2006. The interpretive tradition and the related methodology are discussed in more detail in chapter 3.notes to pages 15–17

Chapter 1 1. This rich debate can be seen also in Amundsen 1989; Ariès 1981; Berger 1969; Brody 1989; BrooksGordon 2007; Hoerster 1998; Kaufmann and Sharon 2005; Kearl 1989 and 2009; Kellehear 2007; Lupton 2003; Noys 2005; Shewmon and Shewmon 2004; Walter 2007 and 2008; Wouters 2002. Also, large philosophical works on human existence reflect this notion of death and the respective relation to the other (see, e.g., Levinas 1994; Ricœur 1990). 2. The Christian figure of memento mori implies the subordinate character of the decision concerning dying, which lay exclusively in the hands of God (see also Ariès 1981). It reminds us that human beings do not have an autonomous relationship to their own death. 3. The death’s-head reminds us of our mortality but also that it is out of our hands. 4. As pointed out in the introduction, the encompassing term “end of life” refers to recent debates on a self-chosen death that have diversified the terminology (Fergusson 1997; Sharma 2004; Macer 2003). At the same time, these discussions provoke moral reflections on care for the dying (Clark 2003; Hermsen and Ten Have 2002; Mortier et al. 2000; and others), which is the second context in which the term is used. 5. In both the debate on end-of-life care and the debate advocating self-chosen death, demographic changes have in recent years played a greater role insofar as they affect the organization of the society in the context

of how the latter treats its dying members. Demography also initiates a change in conceiving our needs, wishes, illusions, and ideas, in judging and evaluating certain practices. Among the lifestyle choices generally vaunted as most influential regarding the end of life are the increased mobility of the population and the declining number of multigenerational homes that once functioned as care settings for the dying. The altered lifestyle choices represent a significant area of interest in end-of-life studies in ethics and in public health, but the focus of this book lies elsewhere. Among many studies, those by Clark (2002, 2003) and Gronemeyer (2005) can be named here. Clark’s work has shaped the British and the European contexts of the debate on care. In the Czech context, the large investigation done by KubeЕЎovГЎ et al. (2003) provides a good picture of how dying outside of hospital dominates the society. 6. German language mirrors in fact the negative connotation of the term Euthanasie through the Nazi regime and distinguishes between Euthanasie and Sterbehilfe (help to die). See also the introduction. 7. Some debates begin to distinguish the general form of suicide assistance from “physician-assisted suicide” and mirror by that the fact that the practice has Page 217 →increasingly developed in the medical environment (see the discussions in Koller 1993 and Mortier et al. 2000).notes to pages 17–20 8. See also Hofstede 2001. 9. The association then merged with the Hemlock Society, briefly named End of Life Choices, with Compassion in Dying, under the label Compassion and Choices of Washington. The current debate on the topic can followed on its website (http://www.compassionandchoices.org/cid/). See also the analysis in Wenidoppler 2006. 10. The whole movement is coordinated through a U.S. nonprofit organization: http://www.deathwithdignity.org. Oregonians remain the main group of coordinators. 11. For the development of the right-to-die movement, see Annas 1990 and 1995; Bopp 1990; and Kastenbaum 2000. 12. Cf. www.libertytothecaptives.net/Chronology_of_euthanasia.html. It has so far been necessary for each U.S. state to have its own legislation akin to California’s Natural Death Act. The general legislation concerning patient rights on the federal level is found in the Patient Self-Determination Act (PSDA), the most recent version of which was passed by the U.S. Congress in 1991. 13. Embedded in Catholic or Evangelical Christian settings, hospices were once asylums for war veterans (Clark 2003; Falkowitz 2000; Kennedy 2001; Waldrop and Rinfrette 2009) or “dying houses” for people without families. A large international Observatory of End-of-Life Care project has been launched on the history of hospice movements. The “Hospice History Program” examines, indeed, the historical narratives that have supported hospice actions and launched diverse social interpretation of these institutions. Cf. http://www.hospice-history.org.uk/ 14. In the development of palliative care of the last two decades, the individualization of the end of life has been one of the main keywords (Castra 2015). 15. A large body of work, reaching from ethical to social and political analysis, can be found on the Dutch practice of euthanasia. See, e.g., Kennedy 2002; Van Der Heide et al. 2007; Van Holestey and Trappenburg 2001. 16. The activities of NVVE are described at http://www.nvve.nl/nvve2/pagina.asp?pagkey=72051 17. Cf. the official Oregon government website: http://egov.oregon.gov/DHS/ph/pas/index.shtml 18. Robert Pool (2001) shows in his analysis of the media debate in the Netherlands regarding legalization of euthanasia that the narratives of “painlessness” and of “control” stimulated the concept of good death. 19. One also must bear in mind that judicial power plays a strong role in Dutch politics. This relationship is part of the “depolitization” of moral issues by transposing responsibilities from the executive and legislative powers to courts (Andeweg and Galen 2002, 154). In the judicial practice, several cases have witnessed a very liberal version of euthanasia extending to elderly people who were “just Page 218 →tired of their lives” or people who were desperate and asked physicians to end their lives (Andeweg and Galen 2002, 157). A comparison between the Dutch and American everyday experience of the medical profession, and its embedding in the larger sociopolitical context, can be found in Griffiths 2000.notes to pages 20–24 20. In this balancing, the end of life joins other health issues that show us how medical research conveys societal development and rearticulates different political institutions. This has been abundantly shown by

recent critical approaches to medical research that have emphasized, especially, that science interacts with society and vice versa. A large body of work has been done on governing through knowledge, thereby pointing to the interaction between science and society. An extensive discussion of these works goes beyond the scope of the present study, but for the debate itself, see Jasanoff 2005; Locke 2004; Memmi 2003 and 2004; Novas and Rose 2001; Prainsack 2006; and Gottweis 1998. 21. As the press release of the case of Diane Pretty v. United Kingdom reads: “The Court found, in agreement with the House of Lords, that States were entitled to regulate through the operation of the general criminal law activities which were detrimental to the life and safety of other individuals.” Cf. European Court of Human Rights 2002. 22. The ECHR judgment includes the Canadian case of Sue Rodriguez, who was in the same situation as Diane Pretty. In that case, one of the Canadian judges published a dissenting opinion. In that document, the ambiguous character of a “life with dignity” becomes quite apparent as the arguments on technological progress and the individual emotional experience of the woman clash. http://hudoc.echr.coe.int/sites/eng/pages/search.aspx?i=001–60448 23. The same goes for the UNESCO’s Bioethical Council, which publishes expert reports on cases and establishes, on that basis, ethical guidelines intended to serve the global community (UNESCO 2013). 24. The specific practices of both organizations are outlined in their respective information material. See Dignitas 2013; Exit 2013; and the discussion in Fischer et al. 2008. 25. “Redezeit—Sterbehilfe menschenwГјrdig oder inhuman?,” radio discussion, Norddeutscher Rundfunk, 5 October 2005. 26. “Was einem den Atem nimmt,” SГјddeutsche Zeitung, 22 March 2009. 27. “Was einem den Atem nimmt.” 28. “Redezeit—Sterbehilfe menschenwГјrdig oder inhuman?,” radio discussion, Norddeutscher Rundfunk, 5 October 2005. 29. The most recent figures on the number of non-Swiss patients are from 2016, reporting six people from Switzerland, seventy-three from Germany, forty-seven from Great Britain, thirty from France, nine from the United States, four from Austria, and one each from Australia, Hong Kong, Ireland, Israel, Canada, Spain, and Uruguay. These figures do not substantially differ from previous years, although the number of patients accommodated by the association increases. See http://dignitas.ch/images/stories/pdf/statistik-ftb-jahrwohnsitz-1998–2016.pdf, accessed 31 January 2017.notes to pages 24–26Page 219 → 30. This call is part of the observed discourses on the end of life. The aim of this book is neither to judge the values linked to the “world politics on the end of life” nor to state which of those values are prevalent. The notion “world politics” is discussed in Bartelson 2003 and 2009. 31. As is the case for the concept of “the moral self”; cf. Fish 2013 and Durkheim 1968. 32. The call for moral and religious traditions of individual countries demonstrates their restriction to certain types of societies. This book analyzes specifically the Western society based on the values of autonomy and dignity. In bioethics, there is considerable debate on the cross-cultural perspective on end-of-life issues. See, e.g., Glick 1999; Jotkowitz, Glick, and Zivotofsky 2010. 33. Great Britain also has been debating a law on a form of self-chosen death, and other countries, among them Germany and Italy (see Steurer 2011), debate the end-of-life controversy by framing it in personal stories of suffering patients. 34. Cf. http://www.lucacoscioni.it/, accessed 31 January 2017. 35. The Barbarian Invasions (2004), dir. Denys Arcand. 36. In the Oscar-winning film The English Patient, the nurse quietly administers euthanasia to the dying patient at his request. The English Patient (1996) (dir. Anthony Minghella). 37. Amour (2012), dir. Michael Haneke. 38. This is also the case in Million Dollar Baby (2004), dir. Clint Eastwood, where the boxer girl, paralyzed after an accident, does everything she can to end her life. Her trainer and friend helps her die. Other films debating this suffering when facing the end of life are the Spanish film Hable con ella (2002), dir. Pedro AlmodГіvar; Dying Young (1991), dir. Joel Schumacher; and On Golden Pond (1981), dir. Mark Rydell). 39. My Life without Me (2003), dir. Isabel Coixet. 40. Some depictions of the individual choice are reinforced by films based on true stories: the Oscarwinning film The Sea Inside (2004) is based on the death of the Spanish citizen RamГіn Sampedro.

Similarly, The Diving Bell and the Butterfly (2007) is the memoir of the French editor-in-chief of Elle, Jean Dominique Bauby, which he dictated with his eyelid. 41. A large body of research has been produced in both sociology and cultural anthropology related to the status of death and dying. See further Brooks-Gordon 2007; Castra 2015; Clavandier 2009; DilmaГ§ 2016; Noys 2005; Roudat 2017; and Stevens 2007. 42. See Carpentier and Van Brussels 2012; DurnovГЎ 2006 and 2010; Weber 2008; and Kellner 2001 for the larger debate on media sensations. The fatalistic or catastrophic discourse that was deployed, for example, in the Terri Schiavo case is reshaped along with the secularization of the society because it finds new rituals (as reports Doka 2001), such as online grief (DurnovГЎ 2013 and Prigerson and Jacobs 2001), new type of funerals (BacquГ© 2012; DilmaГ§ 2016; Gadberry 2000), and shifts to particular types of rituals (mainly to cremation or no funeral: see Berol 2010 and MalignГ© 2006).notes to pages 27–39Page 220 → 43. This result responds to the poll published in Le Monde on 5 April 2006. In 1998, only 57 percent agreed that the terminally ill should have access to euthanasia (Cf. FNEGE [FГ©dГ©ration nationale de l’enseignement et de la gestion de l’entreprise], SynthГЁse 2001, FACE). Polls done after the Vincent Humbert affair showed higher numbers: an inquiry done by the agency Taylor Nelson Sofres in September 2005 found that 81 percent would accept euthanasia of terminally ill patients. The poll by ARVAL (Association for Research of Value Systems), the French unit of the European Values Study, has shown that 6.55 out of 10 in France would accept euthanasia for an incurable disease. A 2008 poll published by the society magazine Internaute included the following question: “A person affected by an incurable disease asks for an end to her or his life. Should such a decision be accepted?” 44.6 percent of the respondents agreed without conditions, and 49.6 percent agreed if a third person concurred with the decision. 44. “Si c’est la seule solution, j’irai lГ -bas. C’était mon dernier combat.” Translation by the author. 45. “Les mesures contenues dans la loi Leonetti, les avancГ©es en matiГЁre de soins palliatifs et l’ouverture de recourir au suicide assistГ© que nous prГ©conisons dans notre avis, permettent d’écarter l’euthanasie comme solution pour la fin de vie.” Translated by the author. 46. As of October 2016, the Czech Republic had seventeen hospices, eight of which were affiliated with religious institutions, with the rest run by nonprofits such as Homecoming. 47. Austria (eight million inhabitants) has eleven hospices but offers, in addition to terminal-care units in hospitals, twenty-seven mobile hospice teams (see http://www.hospiz.at/pdf_dl /Ergebnisse_Datenerhebung_2009.pdf, accessed 2 November 2010). Hungary (ten million inhabitants) reports eleven hospices (see http://www.hospice.hu/english/hospice_in_hu.php?almenu=5#szoveg, accessed 2 November 2010), augmented by thirty-five mobile teams. Both countries have legislation that deals specifically with hospice care. Homecoming runs mobile hospice teams in Prague; outside of Prague are three initiatives that follow Homecoming’s philosophy. 48. In 2009, JulГ-nek had to resign after he was defeated by the Social Democratic candidate in senate elections, and the controversy around the introduction of these fees was largely blamed for his defeat, as the issue dominated the election.

Chapter 2 1. The broad and manifold discussion on emotions and the various ways of analyzing them exceeds the present focus on intimacy. However, let me name some pivotal works in the field: the discursive nature of emotions has been studied by Ahmed 2004; Douglas 1966; Gould 2009; HarrГ© 1986; Norval 2009; Nussbaum 2001; Hochschild 1998; Rorty 1980; and Sauer 1997; studying emotions as causal factors was foreseen, e.g., by Booth and Wheeler 2008. Other approaches qualify emotions as urges that motivate actors (such as Barbalet 2002; Goodwin Page 221 →2001; Ortony et al. 1990). In international relations, the move toward affects has been recently quite influential (Solomon 2012, 2014, 2015). Some studies theorize the bodily nature of social phenomena (Clough 2008; Brennan 2004; Gregg and Seigworth 2010), see discourse as raw agency (Glynos 2008), or delve into the psychoanalytical aspects of subjectivity (Stavrakakis 2007

and 2008).notes to pages 39–42 2. Research on social movements (Goodwin 2001; Jasper 2006 and 2001), psychosocial theorizing of emotions in social policies (Barnes 2008; Stenner and Taylor 2003), and recent analyses of policy practitioners (Newman 2012; Sullivan and Skelcher 2002) suggest that this separation between “rational” and “emotional” is illusory because emotional accounts of knowledge production build the core of policy formulation and because emotions can be both means and ends that accompany actors’ pursuit of goals and interests (see Hunter 2003 or Jasper 2011). For the review of the debate on emotions as part of rationality, see Bondi 2005 and 2014; Dixon 2012; Jasper 2011; Porter 1999; and Nussbaum 2000. 3. This has been stated recently, for example, by Sasley 20011; Booth and Wheeler (2008) have proposed an analysis of the state’s actions. These studies have, however, a different ground from the present study because they do not consider the link between emotion and discourse and do not deal with the governing processes between individual and political institutions. The perspective of a politics of intimacy suggests that this link is fundamental for our understanding of the end-of-life controversy. 4. Recent works in international relations have suggested using emotionality as an explanatory element of the actions of organizations, thereby focusing on the way affects used by actors—such as states—in specific argumentative strategies (Holland and Solomon 2014; Solomon 2015). This reflection does not neglect these important achievements, but its focus lies elsewhere. It departs deliberately from the verbalization of emotions and does not thus operate on the level inner psychological processes, feelings, and the like. The analysis is interested in the way verbalizations of emotions reflect and coproduce a collective semantic boundary distinguishing what is and what is not appropriately emotional and how this boundary gets connected to values to create a moral ground for advocating end-of-life choices. 5. See the psychosocial theorizing of emotions in Ahmed 2004; Gould 2009; Hochschild 1998; Hunter 2015; Stenner and Taylor 2008; and Stenner, Barnes, and Taylor 2008. 6. For the discussion on morality politics in Western societies, see Engeli, Green-Pedersen, and Larsen 2012. 7. A large body of research has been developed from feminist theory: Gillian 1987; Nussbaum 1996; Porter 1999 and 2006;. I discuss this scholarship with respect to the notion of intimacy later in this chapter in the section on self-governing practices. 8. William Connolly turns analytical attention toward the more plastic notion of political institutions that act and react untidily to societal controversies and that are therefore to be regarded as becoming entities rather than closed authorities (see Connolly 2011, 2013).notes to pages 42–47Page 222 → 9. “Discourse”—loosely paraphrasing Foucault—has a double face of not only shaping the transformation of society but also being shaped by it. As Jacob Torfing comments, “Social and political events change our vocabulary and linguistic ambiguities and rhetorical innovations facilitate the advancements of new political strategies and projects” (2005, 5). For a background on the Essex school, see, e.g., Norris 2006; Torfing 1999 and 2005; Laclau 1996. As Frank Fischer holds, “Discourse here is grounded in the awareness that language does not simply offer a mirror or picture of the world, but instead profoundly shapes our view in the first place” (2003, 41). For references on the importance of a discourse in political analysis, see, e.g., Foucault 1984 and Habermas 1981. For details, see the literature on the argumentative turn in policy analysis and interpretive policy analysis: Fischer 2003; Gottweis 1998; Turnbull 2003; Yanow 1996 and 2000, which are discussed throughout the book. This is very near to the general presumption about discourse since the pragmatic turn in linguistics. Cf. Caron 1983. 10. Nick Turnbull sums up the political impact of the ambivalence of scientific knowledge thus: “Even scientific knowledge becomes rhetorical when it is used in a political context” (2003, 4). 11. See Bevir and Rhodes 2003 for “postpositivist,” Yanow 1996 for “interpretive,” Griggs and Howarth 2011 for “poststructuralist,” and Fischer 2009 for “critical.” 12. This struggle was emphasized by discourse linguistics in the 1960s and by social theory in the form of speech-act theory (reactions to the work of Austin [1962] and Searle [1995] in Bourdieu 1982; Norval 2007) or in the form of the engagement of performativity in political theory and public policy (such Butler 1990; Fischer and Gottweis 2012; and Hajer 2005). Interaction between language as a structure “outside there” and the use of it has been also addressed by studies on the practice of fieldwork and interpretation (Malinowski 1947; LГ©vi-Strauss 1973; and Geertz 2001). Claude LГ©vi-Strauss (1973), for example, not

only tries to systematize cultural phenomena by identifying the parallels between diverse cultures, but also aims to conceive of the influence of a specific situation, namely the historical, cultural, or geographical circumstances. Similarly, Clifford Geertz (2001) develops a general view of how one interprets through individual receptions. 13. For general discussion of emotions as nexus of the surrounding world, see Nussbaum 1999; Solomon 2000; Tapolet 2000; and Zelizer 1994 and 2005. 14. As Erwin Bernat puts it, “Finally, death is a biological phenomenon for which we have constructed pragmatic medical, moral and legal policies on the basis of their social acceptance” (2001, 172). New findings concerning the terminal phase of life (especially research on comas and on palliative medicine [Bernatzky 2006]) and new technologies designed to cure previously incurable diseases and disabilities intensified the end-of-life controversy at the end of the twentieth century. 15. An operative definition of brain death was presented in interview FR 8: “24 hours of Zero EEG, in which one has excluded hypothermia as well as medicamentsPage 223 → that could cause attenuation of brain activity.” More general debates can be found in the respective documents of the European bioethical committees. Cf. Oviedo Convention.notes to pages 47–50 16. We will discuss this while speaking about Foucault’s figure of the empowerment of the self, which leads us to the role of self-governing practices in the politics of intimacy (see, e.g., DurnovГЎ and Gottweis 2009; Memmi 2003; Nettleton 2000; Novas and Rose 2003; and Rose 2007). 17. The reason the end of life seems to be so problematic and intertwined with diverse normative patterns has been analyzed by works in medical sociology (such as Fassin 2009; Lock 2004; Memmi 2003; and Novas and Rose 2006), anthropology (Hoyer 2003; Kaufmann and Morgan 2005), and science and technology. Many have argued that the margins of life and death have been blurred and transformed by new contexts (Einstein and Shildrick 2009; Nettleton 2001; Novas and Rose 2006; and Shildrick 1999, 2010). 18. Such an approach is outside the wide stream shaped by Darwinism and sociobiology (see the U.S. debate on biopolitics), and the productive character of the body is not treated here in its complexity (as postulate Sarasin, Tanner, and Fichte). 19. Giddens embeds his view on intimacy in the paradigm of symbolic interactionism. The present reflection tries to penetrate to the sphere of the “symbolic order” by viewing the interaction as a negotiation and by analyzing this negotiation. 20. However, the historical experience with the Nazi regime has turned the classical definition upside down (Winter et al. 2002). It is also in this historical line that the notions of “dignity” and “worth” or “value” have become even more powerful in the debate on terminological diversification (Koller 1993, 79; Reichenbach 2007; and others). Peter Koller sees in the experience of the Nazi regime the origin of the broader diversification of euthanasia into direct/indirect and especially into “voluntary euthanasia, ” “nonvoluntary euthanasia,” and “involuntary euthanasia or euthanasia вЂagainst free will.’” The term “against” must exclude Nazi euthanasia as an act of murdering rather than one of compassion. Euthanasia “without free will” of the patient mirrors the situations where the will of the patient cannot be pronounced and must be reconstructed (via living will, reports of the family, etc.). 21. Furthermore, we can observe in political debates the aspiration to distinguish between the ethical debate strictly speaking and the practice of the legal language. The legal language has nonetheless become amalgamated in the media discourse and then remained so in political debates. Thus, again, a firm separation or purification of legal terms is actually not possible. The particular language form of the terminus can be read not only as a description but as a partial point of view on the particular form of death and dying. We see in the concrete debates around legislation in France and the Czech Republic that every expert speaks about “good dying” as a label used for a specific kind of end of life he or she advocates for or presents as congruent with morality. The difficultyPage 224 → of establishing a term, of framing particular end-of-life practices, is thus part of the present analysis.notes to pages 53–54 22. Rosi Braidotti refers to “nomadic ethics” (2006) and abstracts from the bioethical premises the political order based on individual modes of subjectivation. Braidotti anchors her thinking in the Deleuzian theory of politics as a permanent devenir. Her explanation is similar to that of Jacques RanciГЁre, whose conception of “political” I apply in my reflection on the politics of intimacy. 23. See, e.g., Dreyer, Forde, and Nortvedt 2009; Bernat 1993; BenzenhГ¶fer 1999; Dworkin 1994; Glick 2005; Goffi 2004; Steinbock 1994.

24. The French public sphere is consciously built on secularism as a result of a 1904 law separating church and state. This secularity is one of the fundamental narratives in any debate touching on religious aspects or historical religious traces. Similarly, in the Czech Republic, secularism has historically served as a narrative of distinguishing Czechs from the Austrian monarchy of the nineteenth century, and this posture was strengthened during the Communist post–World War II period, when the regime presented religion as an enemy of the state and evacuated religious practices from daily life. 25. Lakoff and Collier hold that “contemporary ethical discourse lacksВ .В .В . a stable cosmos or theological understanding of human nature to guide ethical reasoning.В .В .В . Contemporary ethics has devolved into empty debates about incommensurable values that are not amenable to rational resolution” (2008, 422). 26. Joshua Meyrowitz (1985, 127–280) call this state of art a “nomadic situation,” where categories are merged and combined. 27. The first mention of biopolitics in the work of Michel Foucault concerned the manifold regulatory activities that were seen as a strategic point through which the state organizes its greatest power: the population (see Foucault 1971, 1974, 1984, and 1989). As James C. Kennedy points out in his historical analysis of euthanasia in Europe, death and dying organizes the population in terms of the ill, the healthy, the dying, and the dead (Kennedy 2001). A similar analysis related to death and dying obtains in the work of Stuart Murray. 28. A specific interest of a political investigation is the Sixth Commandment, “Thou shalt not kill,” which is the basis not just for the Western legal system—which in modern times prohibits the killing of a person except as a form of legal punishment. This premise had been central for the establishment of the modern state, as seen in the reflections of Jean Bodin (1977) and Thomas Hobbes (1998). Under this logic, the state implies a social order in which killing is prohibited unless it is understood as a punishment (see also Agamben 1998). This aspect become highly problematic in European societies, since their democratic foundations are built on the rejection of capital punishment, which is in turn anchored in the declaration of the European Council, among other organizations. Furthermore, this principle appears iteratively as the main critique by the European public intellectuals of the U.S. states that still permit the death penalty. Here I emphasize that, even in a society that accepts the death penalty, such a form of Page 225 →“killing” remains connected to a form of legal punishment that cannot be compatible with the principles of care and with medical practices.notes to pages 54–57 29. Addressed in manifold analyses by science and technology scholars (Hoyer 2003; Lock 2004; Kaufmann 2005). 30. See Gottweis 1998, 2003; Novas and Rose 2006; Nettleton 2000; Rose 2001, 2007. 31. Philippe Sarasin, for example, has done considerable work on industrial society in order to reveal the machinery through which a population is trained to be productive and through which we can observe, on the analytical level, how the organization of the population is crucial for politics (Sarasin 1999, 2001, and 2007; and Sarasin and Tanner 1998). Analyses such as Sarasin and Tanner 1998 show to what extent the Foucauldian principle of the administration of the collective body has emphasized the “measurable” as well as the “regular” of the body, through which society can be governed (see also Lemke 2003; Shildrick 1999; and Turner 1984). 32. In terms of public health, there is a shift toward a certain “delegation of sovereigntyВ .В .В . [that] is caught within a network of forms of expertise of counselors, bioethics, institutional ethics committees, medical and legal professional bodies, as much as it is within the remit of legislatures, courts, judges and politicians” (Dean 2002, 124). 33. Intimacy combines Foucault’s figure of the “empowerment of the self,” through which Foucault shows that the individual adopts, rejects, or revises some practices rather than others (Foucault 1984, 2008), with RanciГЁre’s idea of emancipation (RanciГЁre 2004) because both concepts draw on self-governing techniques that foster responsible individuals and combine discursive control with responsibility, which can bring us further in understanding how intimacy shapes particular forms of public power. 34. Sheila Jasanoff speaks about “civic epistemologies” (Jasanoff 2005, 248) that assemble specific registers of knowledge and their interpretation. Civic epistemologies are determined by historical experiences and particular discourses as well as by interactions among actors within the community at stake.

35. Mary Douglas draws, in her anthropological works on authority and normative accounts of institutions (1986 and 1996), a twofold image of authority: they are looked upon both as normative pivots and as outcomes of social relations. 36. “Social conventions that structure the performance and suffering and pain are drawn upon in order to help establish openness and transparency in the determination of risks: this discursive and practical repertoire of feelings, emotions and effects serves to signal authenticity or genuineness which in turn serves to establish transparency and openness” (Brown and Mike 2002, 261). Nick Brown and Michael Mike suggest authenticity as a by-product of the erosion of the epistemic authority that the life sciences previously had (Brown and Mike 2002, 270). 37. For elaboration on the role of empathy and compassion in policy making Page 226 →see Boltanski 2007; Clarke, Hoggett, and Thompson 2006; Gawthrop 1996; Hoggett and Thompson 2012; Morelle 2010; and Nussbaum 1996, 1999, and 2002.notes to pages 58–60 38. “The new forms of subjectivation are linked to the emergence of complex ethical technologies for the management of biological and social existence, located within a temporal field of вЂlife strategies,’ in which individuals seek to plan their present in the light of their beliefs about the future” (Novas and Rose 2000, 488). 39. In the philosophical context, Immanuel Kant has launched diverse ethical debates about the end of life through Selbstgesetzgebung, the self-acquirement of a law. These reflections are not germane to the core of this book. Rather, I endeavor to engage the interplay of forces coming to the fore through the described transformation. 40. Such a shift toward contextualized and especially personalized discipline is stated by Patricia Ticento Clough (2007) in the conception of the “affective turn” in the social sciences: “Discipline engages a politics of representation, it forms part of a cinematic regime of representation by which familial and national ideological apparatuses function to constitute subject identities, and wherein resistance to these identities and the transgression of the institutional norms that support them is possible, at times even enabled, by the strategy of disciplining” (2007, 19). 41. The works of Georges Canguilhem and Michel Foucault have shown the discursive power of the institution in the definition process of what is permitted and what is prohibited (Naissance de la Clinique, Histoire de la Folie). 42. See Mark Bevir on governance and cultural practices linked to state (e.g., Bevir 1999; Rhodes and Bevir 2010). 43. Eva SГёrenson and Jacob Torfing, as the main theorists opening this investigation line among the European scholarship, link the concept of governance to network practices of state actors and explain how institutions have reacted to the requirement of governance by governing practices (see, e.g., SГёrenson and Torfing 2007) 44. Jon Pierre and Guy Peters pay attention to the fact that “the state remains the key political actor in society and the predominant expression of collective interestsВ .В .В . its role is transforming from a role based in constitutional powers towards a role based in coordination and fusion and private resources” (Pierre and Peters 2000, 25). 45. For further details, see, e.g., Torfing 2007; SГёrensen and Torfing 2007; Colebatch 2009. 46. The context of governance is important for us, as it not only provides the stage for the changed modes of conceiving the power agency, but also implies a tool through which it would henceforth be possible to explain the policies. Arthur Benz explains the fashion of the concept of governance through both: the changed political ontology and the linked epistemological ways of analyzing it. 47. See Fischer 2003 and 2009 for “discursive,” Gottweis 2006 and Turnbull Page 227 →2003 for “rhetorical,” Hajer 2005 for “dramaturgical,” and Yanow 2007 for “interpretive.”notes to pages 62–71 48. “Si la mise en mots de la souffrance apaise l’angoisse, l’angoisse face Г l’indicible bloque la parole.В .В .В . Mais si [elles] sont jetГ©[e]s en pГўture sur la scГЁne publique ils se figentВ .В .В . dans le jugement” (Ruszniewski 2004, 25). Translation by the author. 49. Maarten Hajer has suggested the link between the word and the institution itself as an essential condition that permits the discourse to enter the political field (Hajer 1993). Eva SГёrenson and Jacob Torfing show in their analysis of governance the understanding of an institution as a network of social practices linked to

the network of discursive power (Sørenson and Torfing 2007). 50. Rosi Braidotti (2006) speaks in this context about “cacophonies” that assemble divergent forces and that are meaning-making in their own controversial position. 51. As Maarten Hajer points out: “Discourse provides the tools with which problems are constructed. Discourses at the same time form the context in which phenomena are understood and thus predetermines [sic] the definition of the problem” (Hajer 1993, 45–46).

Chapter 3 1. One way to extract specificities so as to be able to identify characteristics is by comparison. In its ontological understanding, the practice of comparison brings together two (or more) different elements to look at their similarities and differences. Whereas there has been a long tradition of qualifying comparison as a “measure” for hypothesis, as a test for the establishment of scales for norms (as explains Landman 2003), the reception of Clifford Geertz and ethnographic research in general (see further, e.g., Altheide and Johnson 1994) has resulted in other patterns of comparing being established that focus primarily on “understanding the different.” In his book, Tod Landman (2003) adheres to the traditional distinction between qualitative and quantitative comparison. Whereas quantitative comparison seeks “differences in numbers,” qualitative methods seek “differences in kind.” While speaking about challenges of comparative methods, he returns to the systematic study of political phenomena through screening as many countries as possible in order to generate plausible and general conclusions. In this view, the very idea of political comparison introduced by Almond and Verba (1963), which searches for the “best practice,” seems to be consistent with this conclusion. The comparative perspective applied here conveys Geertz’s approach and the ethnographic tradition. 2. An interesting reflection on this difficulty of seizing and quantifying that calls in fact for approaches including interpretive study has been presented by Minodie and Bourdeloie (2016) in their investigation of questionnaire methods in relation to death and dying. 3. Here we can turn to the ethnographical tradition (Dubois 2009; Van Page 228 →Maanen 1988) and grounded theory in general (Denzin and Lincoln 1994; Yanow 2006). These research programs have established a substantial canon of issues to be considered, including which technique of questioning (Wagenaar 2011; WeiГџ 1994) and what principles of inquiry and gathering data one should adhere to (Richardson’s idea of the “narrative of the self” [1993]).notes to pages 76–82 4. One exception was made with respondent CZ 13. Since her job was in academia and the interview took place during the exams period, I interviewed her at work, where there were no other people on the whole floor. It was indeed she who suggested that venue. 5. During the course of the inquiry, there were naturally some respondents who opted out early on. Some people agreed to take part in the study but called me to indicate that they could not do the interview, citing not personal doubts but instead a lack of time. Through the snowball technique, in some cases I was informed by a friend or a family member that the respondent was frightened or did not wish to engage in the survey because she wanted the case to “simply be over.” 6. This question is a direct translation of the one I posed in Czech. I describe the variety of description later in this chapter, where I analyze the Czech case in more detail. 7. Such a perspective goes back to the ethnographic studies by John van Maanen (1988) and John Altheide (1994), which have shown that every analysis is linked per se to “an empathy” of the researcher (Altheide 1994, 498), that is, that the researcher is aware of his or her mind-set toward the culture (objects) she wants to elucidate. 8. Both the researcher and the respondent enter a negotiation of an appropriate communication contract, without which the interpretive results would be misleading, pretending to reveal something they do not actually reveal. Consequently, awareness of the nature of the situation willingly influences the meaning of the story the respondent tells. To embed the latter in the context, to ask the positioning of the speaking subjects toward each other and toward the situation, appears therefore not only as an analytical way to deal with emotional experience, but as an ethical attitude on the part of the researcher. 9. Similar to the interpretive approaches that pay attention to reinscriptions, in which established patterns

are challenged by new alternatives (Gottweis 2006; Yanow 1996 and 2000; Fischer 2003 and 2009), French discourse linguistics interprets meaning through interaction and communication. A “communication contract” frames meaning through positioning of the subject, its mode of language, and context. 10. See especially Adam 1999; Amossy 1999; Charaudeau 2000 and 2005; Ducrot 1972, Maingueneau 1998 and 1999; and Kerbrat-Orecchioni 1999. 11. The notion of the communication contract emerges from the critique by French discourse linguistics of Roman Jakobson’s scheme of communication (1977), which—although formalizing and systematizing the rules of communication in a way that allows it to be followed analytically—is seen as too narrow to Page 229 →incorporate the interactive element that all three—subject, context, and the mode of language—relate to during the communication process. Building upon Benveniste (1972), who claims that all production and reproduction of meaning is intersubjective (and not subjective), French linguist Catherine Kerbrat-Orecchioni (1999) criticizes Jakobson’s scheme for relying on hierarchically given conventions of the speaking subject. She asks for more details about the capacities of the audience that influence every single speech-act. It is not only about meaning, but about the meaning that we share. This aspect of the social construction of reality and the social embedding of every meaning-making provides an instrument to conceive political discourse as a communication network composed of actions and reactions that succeed in a systematic way. Miscellaneous theoretical work has been done on this topic, beginning with the argument about the construction and epistemological practice of meaning-making (Callon and Latour 1992) and reaching to the argument of “performance” of such meaning-making categories (e.g., “performing gender” in Butler 1990). The perspective of the speech act overcomes its initial setting and becomes a metaphor for the general idea of how we interpret political actions and outcomes (as suggests, e.g., Szerszynski, 1999).notes to page 87 12. Concrete law texts, strategy documents, and white papers are included in this category: annual report of Homecoming, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015; Cesta domЕЇ 2007, 2016; CSPM 2016a, 2016b; Czech Statistical Office, surveys 2005–2009, accessed 19 August 19 2009; CVVM 2015; Homecoming (2007) information material (flyers): “Without Pain?,” “Can We Give You Advice?,” “Last Whiles,” “Myths and Questions about Dying and Palliative Care,” “Mobile Hospice,” “We Can Help Each Other,” “About Pain”; Listina zГЎkladnГ-ch prГЎv a svobod, zГЎkon ДЌ. 2/1993 Sb.; Methodical Guidelines of Ministry of Healthcare—Concept of Bed-Care: http://www.ferovanemocnice.cz/data/met.%20opatreni%20nasledna%20luz.pece.pdf, accessed 24 March 2010; MezinГЎrodnГ- pakt o obДЌanskГЅch a politickГЅch prГЎvech, zГЎkon ДЌ. 120/1976 Sb.; MZV Bulletin 2011: PaliativnГ-_medicГ-na_VД›stnГ-k 2011_ДЌГЎstka 5_KvД›ten 2011, Bulletin of Czech Ministry of Health Care, accessed 24 April 2014; petition of a medical professional, “Against the Proposition of the Death with Dignity Law,” 2008, available at Prolife.cz, accessed 3 August 2009; press release of the Green Party in favor of the development of palliative care and against proposition on Death with Dignity, www.zeleni.cz, accessed 17 August 2009; proposition of the law on Death with Dignity, 2008; proposition on the cancellation of the regulation fees in health care, Parliamentary Evidence 503/0, available at http://www.psp.cz/sqw/text/tiskt.sqw?O=5&CT=503&CT1=0, accessed 17 August 2009; roundtable for the future of Czech health organization: http://www.kulatystul.cz report available at http://www.kulatystul.cz/cs/system/files/Zprava_celek.pdf, accessed 28 July 2009; statistical data on Czech health care, http://www.czso.cz/csu/redakce.nsf/i/analyzy_csu?opendocumentand: 2009, accessed 12 July 2009; and http://www.czso.cz/csu/2009edicniplan.nsf/t/9F00454E5E/$File/31150913.pdf, for hospice organization Czech Republic:Page 230 → http://www.hospice.cz/organizace.htm, accessed 13 August 2011; STEM/MARK 2015, data on dying at home, http://cessda.net/, accessed 3 November 2016; integration of palliative care in the medical curriculum: VyhlГЎЕЎka ДЌ. 411/2011 Sb.; ГљЕ™ad vlГЎdy 2011: Strategie PaliativnГ- pГ©ДЌe 2011–2015,http://www.vlada.cz/assets/ppov/rlp/cinnost-rady/zasedanirady/Strategie-paliativni-pece_schvaleno-RLP.doc; ZГЎkon ДЌ. 372/2011 Sb., palliative care received a code to be remunerated by social security; ZГЎkon o dЕЇstojnГ© smrti 2016, law proposition (authors: JiЕ™Г- ZlatuЕЎka, Radek VondrГЎДЌek, KristГЅna ZelienkovГЎ, Petr Adam, Pavel ДЊihГЎk, and VojtД›ch Adam / snД›movnГ- tisk 820 /,http://www.psp.cz/sqw/text/tiskt.sqw?o=7&ct=820&ct1=1.notes to page 87

13. These include the discussion in the Czech senate of the proposition: www.liberalove.cz/archiv.php? co=1221789008, accessed 12 September 2009; proposition of the law on Death with Dignity, 2008; proposition on the cancellation of the regulation fees in health care, Parliamentary Evidence 503/0, available at http://www.psp.cz/sqw/text/tiskt.sqw?O=5&CT=503&CT1=0, accessed 17 August 2009; roundtable for the future of Czech health organization: http://www.kulatystul.cz/—final, report available at http://www.kulatystul.cz/cs/system/files/Zprava_celek.pdf, accessed 28 July 2009; roundtable for the future of the Czech organization of the health-care sector, available at http://www.kulatystul.cz/cs/system/files /Zprava_celek.pdf, accessed 28 July 2011; parliament discussion concerning health-care reform (the regulation of working time of the medical staff, 8 December 2006: available at http://www.psp.cz/eknih /2006ps/stenprot/008schuz/s008017.htm#r1, accessed 17 August 2009; Czech parliament 2008, discussion concerning the regulation fees in health care; proposition on cancellation of the regulation fee, 12 February 2008, available at http://www.psp.cz/eknih/2006ps/stenprot/027schuz/s027209.htm, accessed 17 August 2009; Parliamentary Healthcare Committee, notes from discussions and law submissions, www.psp.cz, accessed 21 August 2009; Parliamentary Healthcare Committee, notes from discussions and law submissions, www.psp.cz, accessed 24 March 2010. 14. I integrated in the analysis professional networks as well as individual experts contributing to the public debate in the form of data sets, expert papers, and strategy papers. AVAST—Caritative foundation program “Spolu aЕѕ do konce” (together until the end), http://nadacnifond.avast.cz/kdo-jsme; Centrum Palliativni pГ©ДЌe—Center for Palliative Care, http://paliativnicentrum.cz/cs; Centrum Palliativni pГ©ДЌe—Center for Palliative Care (2015), expert opinion on the Death with Dignity law, http://www.cestadomu.cz/res/data/089/010033.pdf; ДЊeskГЎ spoleДЌnost PaliativnГ- medicГ-ny—Czech Society of Palliative Care, http://www.paliativnimedicina.cz, accessed 3 November 2016; HlavnГ- DЕЇvody EkonomickГ© Inactivity, http://www.czso.cz/csu/2009edicniplan.nsf/t/9F00454E5E/$File/31150913.pdf, accessed 28 June 2014; hospice organization Czech Republic, http://www.hospice.cz/organizace.htm, accessed 13 August 2009; Marie Munzarova et al.: ProДЌ NE eutanazii aneb BГЅt, ДЌi nebГЅt? Ecce Homo, http://hospice.cz/hospice1/data/munzarova-kol-eutanazie.pdf (part of the information campaign of Page 231 →the Czech Association of Hospices); official letter of the director of the Czech Medical Association to the group of floor managers of the law on Death with Dignity, 26 September 2007, http://www.liberalnistrana.cz/archiv.php?co=1190816055, accessed 17 August 2009; SlГЎma, 2012. http://www.solen.sk/index.php?page=pdf_view&pdf_id=5710, accessed 23 April 2014; Pavel Pafko, “Svobodu vnГ-mГЎm jako nejvyЕЎЕЎГ- hodnotu Еѕivota,”ZdravotnickГ© Noviny, 14 July 2008; interview with the director of the Homecoming association, MF Dnes, 5 August 2008, http://www.umirani.cz/detail-clanek/umirani-nepatri-do-nemocnice-ale-domu.html, accessed 17 August 2009; UZIS 2012, 2015.notes to page 87 15. I screened the Czech press on end of life and palliative care between 2006 and 2016 and collected 129 text units on the topic through this search. I reference only those that I quote directly in the text. 16. Debate on Leonetti Law (2004–2005): https://www.legifrance.gouv.fr /affichLoiPubliee.do;jsessionid=ECBF030C7C5375CD4A1F383C6D9791D9.tpdila19v_2? idDocument=JORFDOLE000017758874&type=general&legislature=12), AssemblГ©e nationale, 26 November 2004, 30 November 2004; SГ©nat: 12 April 2015, No. 1882. Proposition de Loi “relative aux droits des malades et Г la fin de vie,” 26 October 2004, www.assemblee-nationale.fr/12 /propositions/pion1882.asp, accessed 12 July 2009; www.senat.fr/lc/lc1098/lc109mono.html, accessed 12 July 2009. 17. Report of the head of the special parliamentary mission on the law, Jean Leonetti, No. 1708, registered in the French Assembly on 30 June 2004. 18. These documents derive from earlier laws that created important sociohistorical contingency of the debate to press releases, short strategy papers, data sets used in the political debate or memos: CEVIPOF, “BaromГЁtre Politique FranГ§ais (2006–2007) CEVIPOF-MinistГЁre de l’IntГ©rieur,” rГ©alisГ© du 11 au 26 Septembre 2006; Vague 2: “Le modГЁle institutionnel franГ§ais,” Centre de recherche des sciences politiques, http://www.cevipof.msh-paris.fr/bpf/barometre/vague2 /BPFV2_R15579_Ensemble.pdf, accessed 12 July 2009; OECD Dossier MГ©dicine, “Vers les systГЁmes de santГ© plus performants,” Centre de la

documentation franГ§aise, 1999–2004; AssemblГ©e nationale, questions de 12ГЁme LГ©gislature, http://questions.assemblee-nationale.fr/visualiser-questions.asp, accessed 24 March 2005; Avis citoyen: confГ©rence des citoyens sur la fin de vie, http://mc.univ-paris-Ldiderot.fr/usermedia? task=show_media&mediaRef=MEDIA131216093020027&Presid=2900, accessed 4 March 2014; CCNE 2000, 2013a, 2013b; CCNE 2014; http://www.ccne-ethique.fr/, accessed 4 March 2014; Code de dГ©ontologie mГ©dicale, 1995; Conseil National de l’Ordre des MГ©dГ©cins: 29 August 2004, http://www.conseil-national.medecin.fr/article/le-cnom-satisfait-que-le-parlement-examine-la-question-dela-fin-de-vie-568; Delbecque 1994; Editorial-Jean-Louis Lorrain, Lettre du CEERE—Octobre 2012, 28 September 2012, No. 56; Health-Care reform: Projet de loi portant rГ©forme de l’hГґpital et relatif aux patients, Г la santГ© et aux territoires, Octobre 2008, No. 1210, presented by. FranГ§ois Fillon, the prime minister and Roselyne Bachelot-Narquin, Health minister; Loi de March 4th 2002: “Droit fondamental Г la protection de la santГ©.”; Page 232 →No. 1105 Proposition de rГ©solution tendant Г crГ©er une commission d’enquГЄte sur la rГ©alitГ© de l’euthanasie en France, EnregistrГ© Г la PrГ©sidence de l’AssemblГ©e nationale le 7 octobre 2003, http://www.assemblee-nationale.fr/12 /propositions/pion1105.asp, accessed 12 July 2009; No. 182, 336 proposition de loi, “Assistance mГ©dicalisГ©e pour une fin de vie digne,” 10 February 2014, http://www.senat.fr/enseance /2013–2014/182/Amdt_1.html, accessed 17 April 2014; No. 1960 (rectifiГ©) proposition de loi, relative au droit de finir sa vie dans la dignitГ©, October 7 2009, National Plan for development of palliative care 2015–2018, intervention of Health Minister Marisol Tourrain, http://social-sante.gouv.fr/IMG/pdf /15_12_03_intfaef.pdf, accessed 28 October 2016; Proposition de loi 1999-04-14, www.assembleenationale.fr/12/cri/2004–2005/20050076.asp, accessed 12 July 2009; RГ©ussir ensemble le changement—Le projet socialiste pour la France. Le parti Socialiste, Impression: Paris, Seghers, 2006; SociГ©tГ© FranГ§aise d’accompagnement et de soins palliatifs, CommuniquГ© de presse Paris, le 18 dГ©cembre 2012; speech of Nicolas Sarkozy in the favor of the health-care reform No. 1210, speech pronounced on 18 September 2008; www.assemble-nat.fr/12/tribun/fiches_id/1946.asp, accessed 12 July 2009; No. 1882, Proposition de Loi “relative aux droits des malades et Г la fin de vie,” 26 October 2004, www.assemblee-nationale.fr/12/propositions/pion1882.asp, accessed 12 July 2009; www.senat.fr/lc /lc1098/lc109mono.html, accessed 12 July 2009; No. 2016-87, February 2016, rating new right of terminal Ly Ill and end-of-life patients (crГ©ant de nouveaux droits en faveur des malades et des personnes en fin de vie); Report 2016: Report of the presentation of the law text (Rapport de prГ©sentation et texte de la proposition de loi de MM. Alain Claeys et Jean Leonetti crГ©ant de nouveaux droits en faveur des malades et des personnes en fin de vie), http://www.ladocumentationfrancaise.fr/var/storage/rapports-publics /144000752.pdf, accessed 28 October 2016.notes to page 87 19. This group of documents covers in general texts dedicated to informed publics. Media interventions by experts, and the media coverage of their political actions (such as the “Manifesto of 2000” in 2007) are not included in this category but are integrated in the media debates: ADMD, Association pour mourrir dans la DignitГ©, presentation of the association, http://www.admd.net/la-structure/presentation.html, accessed 3 November 2016; Blog-fin-de-vie, http://www.fin-de-vie.org/2015/03/la-loi-sur-la-fin-de-vie-estelle-une-avancee.html, accessed 28 October 2016; Forum on euthanasia, offered by Doctissimo; France: http://forum.doctissimo.fr/sante/euthanasie/liste_sujet-1.htm, accessed 12 July 2009; INED 2014; Infirmieres.com, web platform for professional nursing, http://www.infirmiers.com/profession-infirmiere /legislation/adoption-definitive-loi-claeys-leonetti-fin-vie.html, 4 February 2016; information server of palliative care in France, http://www.doctissimo.fr/html/sante/mag_2000/mag1208/dossier/soins_palliatifs /sa_2988_organisation_soins.htm, accessed 12 July 2009; IFOP 2014; IPSOS 2013: Inquiry among French physicians on end of life, Conseil Nationale de l’Ordre des MГ©dГ©cins, 10–23 January 2013; L’Institut national d’études dГ©mographiques, http://www.ined.fr/en, accessed 30 June 2009.notes to pages 87–94Page 233 → L’Alliance pour les Droits de la Vie, respect of life and the evaluation of the opinions of twelve candidates for presidency, 20 April 2007, www.adv.org; Livre blanc de l’Association pour le droit de Mourir dans la DignitГ©, www.admd.net, accessed 12 July 2009; Livre blanc de la douleur, 2005, Director

of the document Alain Serrie; Médecins—Petition de 2000, Nouvel Observateur, 10 March 2007; Plaidoyer des professionnels de santé et de bénévoles d’accompagnement concernant le débat sur la fin de la vie, http://www.sfap.org/content/view/141/165/, accessed 12 July 2009; Societe Française d’accompagnement et des soins palliatifs, http://www.sfap.org/content/view/126/180/, accessed 12 July 2009; newsletter Strasbourg 2009–2014: January 2014—N71; IPSOS 1999. 20. The entire French press has been screened and examined; 453 text units were collected through this search. Only the directly quoted articles are displayed in the references. 21. Debate on Claeys-Leonetti Law (2015–2016), http://www.assemblee-nationale.fr/14/cri /2014–2015/20150174.asp; Assemblée nationale (1st reading), 10 March 2015, 11 March 2015, 17 March 2015; Sénat (1st reading), 16 June 2015, 17 June 2015, 23 June 2016; Assemblée nationale (2nd reading), 5 October 2015, 6 October 2015; Sénat (2nd reading), 29 October 2015; Assemblée nationale: vote on 27 January 2016;

Chapter 4 1. The situation of ADMD is more plastic, as it has—like other patient organizations—the right to be represented in the hospital committees (see, for example, http://www.romero-blog.fr/archive/2006/11/05 /recours-contre-l%E2%80%99entree-de-l%E2%80%99admd-dans-les-comites-des-usage.html, accessed 27 July 2017). The analysis did not investigate that role of ADMD, as focused on the level of public discourse where ADMD was framed on the side opposite the state. 2. One political insider reported on his almost intimate link with the institution at which he works: “You see there in the hall Victor Hugo [the leading writer of the French Third Republic]; you see there statues made by Auguste Rodin [the most famous sculptor]. Even though I pass these every day, I work here; I cannot forget the fact that France has a significant institutional tradition” (interview FR 16). In a similar way, another respondent spoke about the “historical character” of the political practice at the assembly (interview FR 12). 3. “Nous sommes pГ©tris de notre histoire, de notre culture.” Translation by the author. 4. RenГ© Roquet in the parliamentary debate on 26 November 2004. Cf. AssemblГ©e nationale, questions de 12ГЁme LГ©gislature, available at http://questions.assemblee-nationale.fr/visualiser-questions.asp, accessed 14 March 2005. Translation by the author. 5. Since January 2013, the individual monthly support has been 623.29 euros for medication and for physician home visits. Beyond that, recipients also get a Page 234 →reduced fee to use public transportation to see the primary-care physician and other doctors. See A.R. 2-12-1999: intervention pour les mГ©dicaments, le matГ©riel de soins et les auxiliaires pour les patients palliatifs Г domicile visГ©s Г l’article 34, 14В°.notes to pages 95–98 6. As Emmanuel Todd wrote in 1999, the demographic and the social are connected in the macroorganization of different institutional sectors: “The passage of Europe to a massively excrescent situation, in the nineties, will appear to future historians factor that launches a crisisВ .В .В . augmentation of the old population, diminution of the young adults, is—in the view of the consumer logics—a very important variable for the real economy. The demographic deceleration is simultaneously and essentially a Malthusian one.В .В .В . I would reinforce the demographic argumentation” (Todd 1999, vii). 7. One of the experts I interviewed spoke about French values and said on that occasion, “Well, the third one [fraternitГ©] has just disappeared, and I think that the second one [Г©galitГ©] is a matter of interpretation” (interview FR 12). 8. A 2002 inquiry has correlated life expectancy with improved medical technology: “Since the 1970s, success in battles against cancer and cardiovascular diseases, as well as the developments of prevention politics, have decreased the mortality rate of adults. In 1900, a 60-year-old man could expect to live another 12.7 years. In 2002, his life expectancy is now 21.4 years.” Translation by the author. Cf. “DГ©mographie: analyse et synthГЁse-III. Les dГ©terminants de la mortalitГ©.” 9. The regulation of themes considered “intimate” is not uncommon in France: after the Loi Veil was enacted in 1975, and then laws regulating abortion and gender-reassignment surgery in 1976, French

legislators finally decided to recognize homosexual partnerships in 1982. In the development in these debates, sociologist Dominique Memmi (2004) sees a logic that points to the necessity of negotiating the use of one’s own body. The negotiation goes hand in hand with knowledge-making procedures, one of which is presented here as the politics of intimacy. 10. Furthermore, several media reports of ethical committees or palliative associations used this argument: Cf. “Bringing Together Abortion and Euthanasia” (GE, 22 March 2007). 11. Translation by the author. 12. In his “black book of health,” Bardy draws a deplorable, even disastrous, image of the French health-care system. Although the sensationalism inherent in this book limits its usefulness, it is interesting that Bardy, as do many other experts in the field, identifies underestimation of the patient as one of the greatest problems of the system and invites readers to rethink the concept of the patient (Bardy 2007, 329). 13. This fascination in the Mexican population builds one of the main phantasms to which experts refer when describing the modern Western discourse on death and dying. Against the Western imaginary of death as a taboo stands the picture of a Mexican everyday experience tainted by the end of life. Another one, reported on in Atul Gawande’s Being Mortal, is the Indian experience of family responsibility for old age and with that for the end of lives (Gawande 2015).notes to pages 99–109Page 235 → 14. “Loi Kouchner” is named after Bernard Kouchner, minister of health between 2001 and 2002. In his conceptions, Kouchner emphasizes the notion of solidarity and the social aspect of human existence. This law has stressed again the notion of solidarity within health care and introduced the principle of nondiscrimination within health-care services. Cf. http://www.aavac.asso.fr/loi_kouchner /loi_4_mars_2002_analyse_loi_kouchner.php 15. “The increasing financial coverage of what has gradually developed into an unacceptable biological risk or misfortune is precisely what Michel Foucault defined as the advent of biopolitics” (Memmi 2003, 647). 16. Sarkozy speech on 18 September 2008. “Le vieillissement de la population franГ§aise est du reste le rГ©sultat de la formidable amГ©lioration de son Г©tat sanitaire. Mais la santГ© est aussi un bien fragile, prГ©caire, et c’est pour cela que chacun d’entre nous quand il pense Г sa propre santГ©, s’inquiГЁte et se prГ©occupe. Ma responsabilitГ©, celle du Gouvernement, c’est de prendre en compte l’attente des FranГ§ais et de tout faire pour essayer de leur donner satisfaction.” Translation by the author. Emphasis added. 17. This argument is pursued also by the Alliance for the Right to Life: http://www.adv.org/lactualite-delalliance/etats-generaux-de-la-bioethique/tournee-bioethique-le-bilan/, accessed 17 July 2009. 18. “We have to be careful of what people say, the situation in which [they say it], and the nature of the answer they want to have,” explains the respondent further. 19. The examples cited are from the parliamentary mission transcription published for the French parliament (Leonetti 2004). 20. “DГЁs lors, eclairez-nous sur la vГ©ritГ© que vous vivez” (Leonetti 2004, 262). Translation by the author. 21. “Quid du refus de soins du testament de vie, du mandataire?” (Leonetti 2004, 17). Translation by the author. 22. “Le maintien d’une vie totalement artificielle alors qu’il y a irrГ©versibilitГ© absolue de l’état du malade, n’est pas une obligation de la sociГ©tГ©, ni de la morale, ni du respect des personnes.” Translation by the author. 23. “Le recours aux arrГЄts de vie ne peut pas ГЄtre justifiГ© stricto sensu, ni admis comme une pratique tout simplement normale. Pourtant, sous certaines conditions, il peut ГЄtre non seulement justifiГ©, mais dГ©clarГ© Г©thique Г condition que son caractГЁre transgressif soit maintenu. Le caractГЁre Г©thique de l’acte tient Г la maniГЁre de le faire et de le vivre. Maintenir le questionnement, assumer l’ambivalence, la complexitГ©, le paradoxe de la situation sont des gardefous contre la tentation de simplifier et de rГ©soudre le problГЁme une fois pour toutes.” Translation by the author. 24. On the tendency to generalize the meaning of the end of life, see, for example, interview FR 5. 25. This objectivity and collegiality were emphasized by both political actors (interview FR 4) and medical professionals (interview FR 1).

26. The principle of “collegiality” (in the sense of “cooperativeness,” “helpfulness,” “friendliness”) brought perhaps the most visible change for daily medical practice (interview FR 2).notes to pages 109–14Page 236 → 27. The term “rationalization of end of life” is used by the author of the end-of-life law, Jean Leonetti, in discussions. See “MГ©diatiser Euthanasie,” France 5, 5 June 2005. 28. In addition to the final interpretation, the choice of those experts becomes rather obscure (interview FR 10). 29. De Hennezel reports on the “promising areas” where progress has been made and points indeed to the development of palliative culture (which she clearly wants to enhance). She sees a particular forum for elaboration of such palliative culture in local hospitals. These could engage reflections and launch debates that inform patients about the possibilities of palliative care in the region. The state of palliative care is grossly insufficient: for 100,000 inhabitants, there are only five beds—most of them in oncology (de Hennezel 2005, 11). Mobile equipment, at least four hundred supplementary beds, and domicile care are seen as part of the solution. Two of the interviewees, FR 12 and FR 2, were part of such networks and saw the “social” aspects as most thorny. Both types of care—mobile and domicile—place upon the family an additional financial responsibility that is often not covered by the social security system. In other words, we find, again, that the struggle with the intimacy of the end of life lies at the edge of psychosocial state of the individual and his or her environments, including the financial question. 30. Quoted from an interview with Nicolas Teznier (1993). “La dignitГ© devient notre seul recours concevable, pour ainsi dire, notre seul atout. ManiГЁre de bouГ©e de transcendance, au cЕ“ur du tourbillon, elle nous permet de survivre aux courants contraires comme de nous relier au vivre en ensemble.” Translation by the author. 31. “En effet cette proposition de loiВ .В .В . prouve que les citoyens que nous reprГ©sentons ont Г©tГ© Г©coutГ©s, que leurs prГ©occupations ont Г©tГ© comprises et que les dГ©putГ©s sont capables de dГ©passer les dimensions (clivages) politiques et idГ©ologiques” (In fact, this proposition of a lawВ .В .В . certifies that the citizens we represent have been heard, and that we have understood their concerns, and that the deputies are capable of transcending political and ideological dimensions). Marionne Briot (UMP). Translation by the author. 32. The media has also covered other persons who had similar end-of-life experiences (e.g., Christine MalГЁvre). Since the logics of their discourse do not differ in any significant way from that of Chaussoy and Humbert, I exclude them from this illustration, although they were taken into consideration during the case study. 33. The idea of the “protest scene” is enforced by the media: “Au Nom de leur peur,” Le Monde, 12 April 2005; “Le SГ©nat adopte le droit au вЂlaisser mourir,’” Le Monde, 13 April 2005; “La proposition de loi sur la fin de vie adoptГ©e aprГЁs un dГ©bat houleux au SГ©nat,” Le Monde, 14 April 2005. 34. This opposition between public and private actors is significant in French society as it appears also in other conflicts I briefly mentioned in the introduction to chapter 4, such as the vote of the European constitution and the debate on same-sex marriage.notes to pages 114–22Page 237 → 35. We see quite similar logic in the inquiry of the parliament, but this logic is hidden from the public scene. The actors of the inquiry were named neither in media reports nor in the debate on the law itself. 36. See further also the proclamation of Association pour le Droit de Mourir dans la DignitГ©, www.admd.net 37. “Il y a un an, Vincent Humbert mourrait.” www.admd.net 38. Among “those who know,” some political actors speak, for instance, about Marie Humbert as a “simple woman of the public” (interviews FR 1 and FR 5). 39. “C’est vrai que j’ai outrepassГ© le code de dГ©ontologie, mais j’ai agi par compassion et respectГ© le souhait de la patiente qui ne voulait pas dГ©pГ©rir. Je ne me sens pas coupable mais responsable.” Translation by the author. 40. “Ces soignants partent d’un constat de la difficultГ©, mГЄme le drame, que certains patients et leurs familles rencontrent face Г de maladies totalement incurables et relГЁvent cette souffrance physique et morale.” Translation by the author. 41. “Mais les mГ©decins en question n’entendent pas de cette oreille! Souffrir est pour eux au-

delГ de la dignitГ© humaine.” Elisabeth Bourgois, another ethicist involved in the public debate, calls “for a medicine of life” (pour une medicine de vie) (Zenit, 21 March 2007). Translation by the author. 42. “L’urgence, aujourd’hui, c’est que les malades puissent avoir accГЁs aux soins palliatifs dans des conditions satisfaisantes” Translation by the author. 43. This quotation was Deputy Henriette Martinez’s (UMP) answer to the question about legalizing euthanasia: “l’aide Г la dГ©livrance volontaire en fin de vie.” Translation by the author. 44. “Un verdict trГЁs clГ©ment relance le dГ©bat sur l’euthanasie active” (Г soft verdict reopens the debate on active euthanasia), Le point, 16 March 2007. 45. “Nous saisirons le parlement d’un projet de loi вЂVincent Humbert’ sur l’assistance mГ©dicalisГ©e pour mourir dans la dignitГ©; cette loi aura pour objet de permettre aux mГ©decins dans des conditions strictes du respect de la volontГ© de leur patient et d’accompagnement, d’apporter une aide active aux personnes en phase terminale de maladie incurable ou placГ©e dans un Г©tat de dГ©pendance qu’elles estiment incompatible avec leur dignitГ©.” Translation by the author. See also RГ©ussir ensemble le changement—Le projet socialiste pour la France. 46. LibГ©ration, 9 December 2002, writes: “вЂMireille Jospin-Dandieu, midwife, widow of Robert Jospin, member of the sponsoring committee of ADMD, decided in serenity to leave, at the age of ninetytwo, on 6 of December 2002,’ is written in the death announcement” (“Mireille Jospin-Dandieu, sage-femme, veuve de Robert Jospin, membre du comitГ© de parrainage de l’Association pour le droit Г mourir dans la dignitГ© [ADMD], a dГ©cidГ© dans la sГ©rГ©nitГ© de quitter la vie, Г l’âge de 92 ans, le 6 dГ©cembre 2002,” est-il ainsi Г©crit dans l’avis de dГ©cГЁs). Translation by the author. 47. This was, for instance, not the case for the association “Fault qu вЂon s’active, which is viewed as quite radical. 48. Another presidential candidate, Jean-Marie Le Pen, announced that he is against any legislation that would be “extremely dangerous” (NO, 8 March 2007).notes to pages 123–34Page 238 → 49. See alto “Sarkozy et Royal confirment leur projets pour la fin de vie” (MO, 30 March 2007), and Synthesis of the press “Ethique et politique” (GEN, 2 May 2007). 50. “ArrГЄtons de diaboliser cette parole sitГґt qu’elle nous dГ©range, la criminalisation de l’euthanasie n’est pas une bonne solution d’autant qu’elle ne fait pas avancer le dГ©bat” (LI, 30 March 2008). Translation by the author. 51. “La dГ©mocratie sanitaire a permis l’émergence des droits des malades, qui s’accommodent mal avec le paternalisme mГ©dical” (MO, 14 April 2007). Translation by the author. 52. “Or, depuis les affaires d’euthanasie mГ©diatisГ©es comme des actes вЂpositifs,’ вЂde compassion,’ rГ©alisГ©s par вЂamour,’ nous dГ©couvrons que des femmes se demandent si elles sont вЂmauvaises mГЁres’ de continuer Г soigner leurs enfants atteints de graves handicaps au lieu de les tuer, des patients croient devoir demander l’euthanasie au lieu de faire leur chemin dans l’épreuve de la maladie” (ZГ©nith, 21 March 2007). Translation by the author. 53. BVA is an enterprise doing polls on market and on public opinion in general. See http://www.bva.fr 54. “On va ailleurs. Il y a deux dГ©marches diffГ©rentes qui sont en jeu. L’une relГЁve de l’éthique de l’autonomie, вЂc’est mon choix’; l’autre de l’éthique de la vulnГ©rabilitГ©, вЂon doit soutenir le plus faible.’” Translation by the author. 55. “We hear that we are behind the times. But the British recommendations on the end of life are exactly parallel to those of France. And Switzerland is actually thinking about revising its very liberal legislation.” Jean Leonetti, the author of the French end-of-life law, quoted by Figaro, 17 November 2009. (“On entend dire que nous sommes en retard. Mais les recommandations anglaises sur la fin de vie sont exactement calquГ©es sur celles de la France. Et la Suisse est en train de revenir sur sa lГ©gislation trГЁs libГ©rale.”) Translation by the author. 56. Manuel Valls argued that “the Leonetti Law does not respond to all end-of-life situations, even if we should know better its dispositions, and to be able to accompany better the families, especially to develop a network of palliative care” (La loi Leonetti ne rГ©pond pas Г toutes les situations de fin de vie, mГЄme s’il faut en faire mieux connaГ®tre les dispositions, mieux accompagner les familles et dГ©velopper le

rГ©seau de soins palliatifs) (FI, 18 November 2009). Translation by the author. 57. “Je suis mГ©decin, mais je plaide pour que le dГ©bat soit plus sociГ©tal que mГ©dical.” Translation by the author. 58. Under the Belgian law, among other requirements, there must be proof of medical futility and unbearable suffering, and the patient must have reached majority. 59. “On pense que ce sont les vivants qui ferment les yeux des mourants, mais ce sont les mourants qui ouvrent les yeux des vivants.” Translation by the author. 60. “Ce qui me gГЄne ce qu’on veut lГ©gifГ©rer sur le suicide assistГ© et qu’on part d’une Г©tude sur seize personnes.” Translation by the author. 61. “Ils ne demandent rien de vive voix. Mais quand on leur touche le front de Page 239 →la main, en nous regardant bien droit, ils disent avec les yeux: вЂJe suis prГЄt.’” Translation by author.notes to pages 135–47 62. “La fin de vie est un choix Г©minemment personnel, intime et elles ne souhaitent pas que la loi et, Г travers elle, l’Etat interviennent et surtout dГ©cident Г leur place. Cette intrusion dans une rГ©flexion faite souvent dans un grand sentiment d’isolement et des situations pГ©nibles est ressentie comme injustifiable et d’une rare violence.” Translation by the author. 63. “À l’heure oГ№ la fin de vie coГ»te de plus en plus cher, on pourrait passer d’un вЂdroit Г mourir’ Г un вЂdevoir de mourir’ pour des raisons Г©conomiques.” Translation by the author. 64. “DrГґle de semaine qui aura vu, mardi 24 juin, le Conseil d’Etat juger lГ©gal l’arrГЄt des traitements de Vincent Lambert, en Г©tat vГ©gГ©tatif depuis six ans, sans entraГ®ner de contestation gГ©nГ©rale, et le lendemain, les jurГ©s de la cour d’assises des PyrГ©nГ©es-Atlantiques acquitter le docteur Bonnemaison, poursuivi pour l’empoisonnement de sept personnes ГўgГ©es en fin de vie. De nouvelles preuves, comme l’avait montrГ© la mission Sicard en 2012, que les FranГ§ais redoutent de se retrouver, un jour, dans une situation inextricable ou de souffrance sans qu’une aide Г mourir puisse leur ГЄtre apportГ©e” (Clavreul 2014). Translation by the author. 65. “Ouvrir les portes, mais pas en grand.” Translation by the author. 66. For details see the media coverage on the case 2014-16 reported in chapter 3c. 67. For details, see Peretti-Watel et al. 2005; Aoun et al. 2005; and Magid 2001. 68. On the conservative position on euthanasia as a “moral catastrophe,” see, for example, “Sarkozy against a Law for Euthanasia,” MO, 26 March 2007.

Chapter 5 1. Survey of 2008. Available at http://www.czso.cz/csu/2009edicniplan.nsf/t/9F00454E5E/$File /31150913.pdf, accessed 19 August 2009. 2. Space limitations obviate developing the argument of gender and care further, although sociology studies on end-of-life issues have thoroughly addressed this (e.g., Ollivier 2009). I nonetheless considered the prevalence of female respondents in my analysis. The prevalence of economic and demographic arguments was identified as sufficient for the identification of the linkage of intimacy and care when it comes to the institutional embedding of it. 3. Although social milieus are often seen as relevant in health care, my stories did not deliver any large disparities between more educated and less educated, between the urban and the rural population. This was to a large extent given by the frame of the interview, where the emphasis was put on how they liked or disliked what has been going on. In that sense, all of them were disturbed in their everyday lives, and kept constantly questioning their otherwise well-functioning capacity of communicating and negotiating. 4. Pavel Е afr, 2009, editorial, Reflex, 23 July 2009.notes to pages 148–50Page 240 → 5. Note that the left spectrum of the liberal ideology is not labeled as such (interview CZ 10). 6. Furthermore, we could think of “anticommunist” ideology as new kind of hegemony in terms of discourse theory. SlaДЌГЎlek even suggests that the performative action of anticommunism evacuates other ideologies and does not, in that view, correspond to a democratic practice having the ideologies compete (SlaДЌГЎlek 2009). The author makes a discursive analysis of the anticommunist narrative around

the analysis of the main argumentation used during electoral campaigns between 2000 and 2010: “We do not talk to communists, do we?” 7. This experience mirrors observations in other postcommunist democracies (e.g., BГ¶rzel and BuzogГЎny 2010; Lankina et al. 2008; and Sissenich 2010). 8. The placement of U.S. radar in the Czech Republic was negotiated between 2006 and 2009, and then negotiations were dropped, partly as a result of the new U.S. administration. One can observe a certain disregard of public opinion in this affair. Public surveys—which by the way revealed public resistance to the radar (35 percent “completely against” and 26 percent “more against,” CVVM, May 2007)—have not been directly transmitted into actions of public initiatives but have only remained the tools of the institutional actors themselves. Although the political parties have used public opinion for their argumentation, they have not agreed on the inclusion of political activists in the negotiation process (Association “Ne zГЎkladnГЎm”). Furthermore, the administration of the village that was the site of the proposed radar was not party to the negotiations. 9. See the overview of propositions of governmental reforms of health care: Ministry of Healthcare, www.mzcr.cz, accessed 8 May 2014. 10. As stated earlier, the complexity and complicity of the reconstruction of this policy sector can be seen, for example, with the high turnover of health-care ministers between 1989 and 2009 (www.vlada.cz). The lack of a long-term conception for the sector has injured the debates on health-care policy fields, of which the discussions about end-of life care and the general regulation of dying are just two of many (interview CZ 8). 11. Any political engagement by private actors is seen as highly negative due to the Communist past (interview CZ 11). 12. Sociologist Olga NeЕЎporovГЎ analyzes the numbers as follows: “According to the 2001 census, only about 32% of Czechs claimed to belong to a church (84% of whom were Catholics), 59% declared themselves non-believers/atheists, and 9% did not answer the question on religious beliefs. Interestingly, many of those claiming to be non-believers/atheists do in fact hold some kind of personal beliefs, most often comprising a mixture of the occult, magical healing practices, eastern religious ideas, talismans, and various divination practices such as horoscopes, palm reading, etc.” (NeЕЎporovГЎ 2007, 1176). In the 2011 census, the number was even lower, as only 3.29 million Czechs (from the total number of 10,562,214 Czechs counted in the census) declared themselves religious. What is also interesting is that about 4 million did not answer this optional question, whereas in 2001 only 901,000 did not answer.notes to pages 150–60Page 241 → 13. Independent statistical office “Median,” research done in spring 2008 and published in HospodГЎЕ™skГ© noviny, 6 August 2008. 14. A few salient examples of the high turnover follow: LudД›k RubГЎЕЎ was forced to resign in 1993 because of the unsuccessful proposition attempting to restructure health-care insurance. In 1999, Minister Ivan David resigned because of his failed conception on mental health-care policy. Minister Miroslava SouДЌkovГЎ resigned in 2004 after just two years in the position because of failed communication with the Medical Chamber (LГ©kaЕ™skГЎ komora) concerning restructuring the remuneration system for medical doctors. In 2008, TomГЎЕЎ JulГ-nek was forced to resign after his unsuccessful reform of co-pays (regulation fees). I explain the controversy in the next chapter. Cf. Ministry of Health Care, www.mzcr.cz. Some of the problematic discussions concerning health-care reforms appear in the transcription of parliamentary debates at www.pscr.cz. 15. Available at www.eapcnet.org/download/forReccCounВ .В .В . /ReccCE-Czech.pdf, accessed on 20 August 2009. 16. This latter group was supported by ODS “ObДЌanskГЎ demokratickГЎ strana” (Civil Democratic Party—the conservative Right), by liberal parties, and by the media discourse. The real impact of this health-care reform indeed reduced the number of visits (BД›geЕ™ovГЎ 2013). However, the related political debate did not bring these concrete figures but used the image of “elder people” to argue for legitimacy of the regulation (see also JanГ-k 2009). 17. The prevalence of questions about the profitability of the health-care system and about how to restructure health insurance can be seen in the considerable discussion in the parliament and in the parliamentary section on health care, which concentrated on these two topics. Cf. www.psp.cz, sessions

2006–2009 (1–59). 18. Roundtable for the future of Czech organization of health-care sector, available at http://www.kulatystul.cz/cs/system/files/Zprava_celek.pdf, accessed 28 July 2011. 19. The president of the Medical Chamber in the Czech Republic warned in 2009: “Health financial resources are in trouble. This year, already we are declaring a deficit of 15–20 billion. We could balance this through the reserves in the insurance companies, but in 2011 and 2012 the difference will be much bigger than that” (akutalne.cz, 18 August 2009). Translation by the author. 20. Several bioethical readings (Gronemeyer 2005; Thorpe 1993), as well as sociological investigations into the culture of hospices (Clark 2003) proclaim “home” as a central meaning-making category of a “good dying.” 21. According to CPMS estimation, the remaining 1 to 5 percent include diverse other locations, such as accidents, heart attacks, or situations where the place of death remains unclear. 22. The documentary of TomГЎЕЎ Е krdlant (Е krdlant 2009) and reports on Czech television on a patient traveling to Switzerland work with the international embedding and emphasize that the issue is pressing and that the Czech Republic should not fall behind other states.notes to pages 162–89Page 242 → 23. The particular case I reflect on concerns twelve interviews with mourners in the Czech Republic between 2008 and 2009. The interviewees had attended and cared for their relatives or friends for at least one month before the loved one’s death, and their experience was not longer ago than three years and not more recent than three months. 24. Cf. www.umirani.cz/index.php?cmd=page&id=288, accessed 11 January 2007. Unless otherwise noted, the following quotations related to the action of the initiative of this chapter are from this source. 25. A book about Lance Armstrong—before his doping affair was known and at a time when he represented success in the fight against cancer—is often quoted at Homecoming’s online forum because it provides some frame of how difficult times are emotionally experienced. Other forum users cite generally known quotations or religious texts about life and death. Such quotations and references also have a value-oriented function because the respondent is supporting his or her argument by quoting someone who has already been validated by the public as holding “truth-status” (Maingueneau 1999, 100). 26. A web forum in fact can be seen as a structure that enables the “screening” of the feelings and wishes of patients without taking from them the intimate relationship that fits in to the delicate situation of discussions about dying. Metaphorically speaking, the Internet incorporates the creation of a public, but it is placed where emotion can be present. 27. Arlie Hochschild (2003) describes a similar transgression of practices when she analyzes the emotional work. 28. The Internet can be regarded as an institution, insofar as it yields both possibilities and restrictions. Thus, the main question should not be about what is authentic and real about the Internet, but rather what is made possible by this medium in terms of regulating and governing the intimate sphere. If many theoreticians observe the fact that the Internet is not a “free” medium but can be “governed,” as can any other social space, I contend that they do so not in order to draw a cautionary tale of Big Brother watching every step and every word in virtual space. More likely, this reconsideration seems to bring into the discussion the more or less arbitrary interplay of communities and peoples that can have a constitutive role as inputs (reciprocal interaction of agencies and structures) in the determination of organizational solutions or even political outcomes (as discusses, among others, Castells 2001). 29. “ZkuЕЎenosti ze zahraniДЌГ- ukazujГ-, Еѕe nazrГЎl ДЌas, kdy je vhodnГ© to mГ-t zavedeno.” http://zpravy.idnes.cz/zakon-o-dustojne-smrti-eutanazie-dqj-/domaci.aspx? c=A160517_2246630_domaci_hro. Translation by the author. 30. http://www.penize.cz/zdravotnictvi/313537-pravo-na-dustojnou-smrt 31. “SpoleДЌnost, kterГЎ nemГЎ dostateДЌnou pГ©ДЌi pro umГ-rajГ-cГ-, nemГЎ prГЎvo diskutovat o eutanГЎzii.” 32. The regular analyses of health care conducted by the ministry do not deliver any evidence on the perspective of the individual on the quality of dying, unless you count reporting the mortality rate and the number of dead persons in Page 243 →hospital settings (which lies around 80 percent, according to the Czech Statistical Office data in 2007 and in 2013).notes to pages 189–207 33. Cf. http://blog.aktualne.centrum.cz/blogy/iva-holmerova.php?itemid=4100, EutanГЎzie, kati

vyvolávači. (Euthanasia, ketches and whisperers), Holmerová 2008b. 34. Tagesspiegel, interview with Ludwig Minelli, “Wenn Sie das trinken, gibt es kein zurück,” http://www.tagesspiegel.de/weltspiegel/Sterbehilfe-Dignitas-Minelli;art1117,2502357 35. Ludwig Minelli defends Hamerský’s concept: “People die in hospitals, in unfamiliar rooms, without their fellows . . . we offer them needed intimacy.” “Tod auf Bestellung,” http://www.dignitas.ch/WeitereTexte/Tod_auf_Bestellung16.4.2009.pdf. A similar argument can also be found in the interview for Tagesspiegel, “Wenn Sie das trinken, gibt es kein zurück.” 36. Between 2003 and 2007, the Czech Statistical Office further reported that, on average, one physician had to take care for 270 inhabitants. There are around 11 beds available for every one thousand inhabitants, of which approximately 6.2 beds are being administered by the state. The statistical reports do not count beds in terminal care separately. Statistical data are available only from those hospices that report on the status of beds and patients in their care facility. 37. In this view, the 2008 co-pay reform incorporates a figure of an autonomous patient who regulates her health—through knowledge about the “price” of his or her health. The co-pay unmasks the conflicts of patients, who are supposed to be autonomous and able to state what they want (and to pay for it). However, an individual might fear that she is unable to pronounce or realize that wish commensurate to that autonomy. These fears are apparent in the concern about possible harm to the patient’s dignity. Critique of the reform then introduces the figure of patients who lose their dignity because they have to weigh their financial resources against their health needs. In this context, the notion of patient “autonomy” is opposed to the paternalistic figure of the “loss of dignity.”

Chapter 6 1. This discussion has been advanced in international relations by some scholars responding loosely to Wendt’s question, whether a system can achieve reflexivity as a whole (see Amoureux and Steele 2015; Hamati-Ataya 2013; Jackson 2010; Lynch 2000).

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Fieldwork Interviews and Observations FR 1: Medical doctor, Association of French Palliative Care, April 2005. FR 2: Medical doctor, Mobile Hospice Network, Paris, April 2005. FR 3: Medical doctor, oncologist, Hospital, Strasbourg, August 2007. FR 4: French Parliament, Special Mission on End of Life, April 2005. FR 5: French Parliament, April 2005. FR 6: Codirector of the Special Mission on End of Life, April 2005. FR 7: Psychologist, Paris, April 2005.

FR 8: Medical doctor, neurology, Paris, August 2007. FR 9: Association des Soins Palliatifs, Toulouse, July 2009. FR 10: Medical sociologist, Paris, August 2007. FR 12: French Assembly, assistant, April 2005. FR 13: Political activist, Paris, April 2005. Page 266 →FR 14: French Ministry, July 2009. FR 15: Ethical expert, Strasbourg, October 2006 and August 2007. FR 16: French Senate, assistant, July 2009. FR 17: Voluntary hospice worker, Lyon, December 2013. FR 18: Palliative doctor, Lyon, December 2013. CZ 1: Medical doctor, LDN (Unity of long-term ill), VysokГ© MГЅto, November 2008. CZ 2: Nurse, LDN (Unity of long-term ill), VysokГ© MГЅto, November 2008. CZ 3: Medical doctor, LDN (Unity of long-term ill), Prague, May 2008. CZ 4: Nurse, Homecoming, May 2008. CZ 5: Medical doctor, palliative care unit, Brno, June 2008. CZ 6: Mourner, female, Brno June 2008. CZ 7: Medical doctor, palliative care unit, Prague, October 2007. CZ 8: Homecoming, directory, September 2007. CZ 9: Homecoming, director of the Internet initiative, September 2007. CZ 10: Submitter of the Death with Dignity law and director of Eutanazie–DobrГЎ Smrt, Czech Senate, May 2008.

CZ 11: Participant observation, coaching day of Hospice associations, organized by Homecoming, Prague April 24, 2008. CZ 12: Doctor, LDN, Prague, April 2009. CZ 13: Mourner, female, Brno, June 2008. CZ 14: Mourner, male, Brno, May 2008. CZ 15: Mourner, female, Prague, May 2008. CZ 16: Mourner, female, Brno, June 2008. CZ 17: Mourner, female, Brno, May 2008. CZ 18: Mourner, female, region (Vlachovice) March 2008. CZ 19: mourner, female, region (ЕЅebД›tГ-n), June 2008. CZ 21: Mourner, female, region (ЕЅidlochovice), October 2008. CZ 22: Nurse, LDN (Unity of long-term ill), UherskГ© HradiЕЎtД›, April 2009. CZ 24: Mourner, female, region (UherskГ© HradistД›), April 2009. CZ 25: Mourner, male (Karlovy Vary), July 2009. CZ 26: Mourner, female, region (Chomutov), August 2009. CZ 27: Observation, special care unit (LDN), October 20, 2008. CZ 28: Submitter of the Death with Dignity Law and director of the advocacy group Euthanasia–Good Death (Eutanazie–DobrГЎ smrt), August 2014 (electronic correspondence)

Quoted Media Articles I screened the press in both France and the Czech Republic during the entire period of analysis. Only sources providing direct quotations in the book are listed here. In the “Data Archive” section of this bibliography, the reader can find a list of other sources that contributed to the general embedding of the analysis. Page 267 →

Czech Republic “Against the Proposition of the Death with Dignity Law.” 2008. Petition of the medical profession. Prolife.cz. Accessed August 3, 2009. “Byli jste, holoubkovГ©, nД›kdy u doktora v cizinД›?” 2008. MladГЎ Fronta Dnes, 4 January. ДЊeskГЎ Pozice. 2014. ProДЌ neumГ-rГЎme tak, jak bychom si pЕ™ГЎli.ceskapozice.lidovky.cz/proc-neumirame-tak-jak-si-prejeme-d4t-/tema.aspx? c=A140806_195317_pozice-tema_kasa ДЊeskГЎ televize. 2007. HledГЎnГ- dobrГ© smrti [Searching for a good death]. Document of Czech Televison, Dir. TomГЎЕЎ Е krdlant, ДЊeskГЎ Televize 2007. ДЊeskГЎ televize. 2010. Hyde Park s Milanem HamerskГЅm. http://www.ceskatelevize.cz/porady/10252839638-hyde-park-ct24/210411058080420-hyde-park/ ДЊeskГЎ televize. 2012. Debate between Helena StehlГ-kovГЎ and Pavel Pafko on euthanasia, International Symposium of the Czech Medical Chamber—ČeskГЎ lГ©kaЕ™skГЎ komora—28 November. http://www.ceskatelevize.cz/ct24/domaci/205426-lekari-eutanazii-sami-nerozsoudime-chce-todiskusi-spolecnosti/ HamerskГЅ, Milan. 2014. “EutanГЎzie: nic proti niДЌemu. Kdo nchce nevyuЕѕije ji, Е™Г-kГЎ prГЎvnГ-k.”LidovГ© Noviny, 27 August. http://www.lidovky.cz/eutanazie-nic-proti-nicemu-kdo-nechce-nevyuzije-ji-rika-pravnik-ps8-/zpravy-domov.aspx?c=A140824_170548_ln_domov_sk Hein, Jakub. 2014. “DoktoЕ™i, kteЕ™Г- umД›jГ- nelГ©ДЌit.”Respekt, 3 August. respekt.ihned.cz/fokus/c1-62538140-doktori-kteri-umi-nelecit# “Internet interview with Marie SvatoЕЎovГЎ, director of the Czech Hospice Association.” 2008. TГЅden, 25 July. “Poslanec Е ЕҐastnГЅ chce ve SnД›movnД› diskusi o eutanazii.” 2007. PrГЎvo, 22 May. TГЅden. 2014. “Smrt s asistencГ-. Dilema. “PotД›ЕЎit” vД›tЕЎГ- pЕЇlku ДЊechЕЇ a povolit eutanazii?”http://www.tyden.cz/rubriky/domaci /zdravotnictvi/dilema-potesit-vetsi-pulku-cechu-a-povolit-eutanazii_316119.html#.U_3Y42Pzx4A “Účet prosГ-m, pane vrchnГ- JulГ-nku!” MladГЎ Fronta Dnes, 23.2. 2008. VГЎcha, Marek Orko. 2014. “To bychom mohli rovnou zavГ©st i trest smrti.” LidovГ© Noviny, 27 August. http://www.lidovky.cz/eutanazie-v-cesku-tobychom-rovnou-mohli-zavest-i-trest-smrti-p6a-/zpravy-domov.aspx? c=A140824_155030_ln_domov_sk#utm_source=clanek.lidovky&utm_medium=text&utm_campaign=a-souvisejici.clanky.clicks

France

20 Minutes. 2007. “L’euthanasie en question au procГЁs de PГ©rigueux.” 13 March. http://www.20minutes.fr/france/145471-leuthanasie-questionproces-perigueux. Accessed 13 March 2007. Page 268 →APDV. 2013 Alliance for the Right of Life (Alliance pour les Droits de la Vie), “Euthanasie? Faut pas pousser.” http://www.fautpaspousser.com/ AFPAP 2009. “La loi sur la fin de vie a Г©tГ© adoptГ©e.” www.afpap.org/fin_de_vie_12042005.htm. Accessed 12 July 2009. BГ©guin, FranГ§ois. 2015. “La loi sur la fin de vie votГ©e Г l’AssemblГ©e.” Le Monde, 17 March. http://www.lemonde.fr/fin-de-vie/article/2015/03 /17/l-assemblee-vote-aujourd-hui-la-loi-sur-la-fin-de-vie_4595401_1655257.html?xtmc=fin_de_vie&xtcr=28 BГ©guin, FranГ§ois. 2016a. Le Monde, 27 January. http://www.lemonde.fr/societe/article/2016/01/27/fin-de-vie-ce-que-va-changer-la-nouvelle-loi-claeysleonetti_4854266_3224.html?xtmc=fin_de_vie&xtcr=7. Accessed 18 December 2016. BГ©guin, FranГ§ois. 2016b. “Fin de vie: dГ©putГ©s et sГ©nateurs s’accordent sur un texte commun.” Le Monde, 20 January. http://www.lemonde.fr /fin-de-vie/article/2016/01/20/fin-de-vie-deputes-et-senateurs-s-accordent-sur-un-texte-commun_4850084_1655257.html?xtmc=fin_de_vie&xtcr=9 BГ©guin, FranГ§ois. 2016c. “La loi Claeys-Leonetti sur la fin de vie dГ©finitivement adoptГ©e.” Le Monde, 27 January. http://www.lemonde.fr/lesdecodeurs/article/2016/01/27/demission-de-taubira-visite-de-rohani-loi-sur-la-fin-de-vie-le-point-sur-l-actualite-a-midi_4854532_4355770.html? xtmc=fin_de_vie&xtcr=8 BГ©guin, FranГ§ois, and Laetitia Clavreul. 2014. “Dix questions autour de l’affaire de Vincent Humbert.” Le Monde, 29 January. http://www.lemonde.fr /sante/article/2014/01/29/dix-questions-autour-de-l-affaire-vincent-lambert_4351187_1651302.html Blanchard, Sandrine. 2007. “DГ©mocratie sanitaire et fin de vie”. Le Monde, 14 April. http://www.lemonde.fr/societe/article/2007/04/14/democratiesanitaire-et-fin-de-vie-par-sandrine-blanchard_896032_3224.html Bui, Doan. 2014. “Affaire Lambert: trancher ou вЂtergiverser’?” Nouvel Observateur, 13 February. http://tempsreel.nouvelobs.com/societe /20140213.OBS6295/affaire-lambert-trancher-ou-tergiverser.html Catholique. 2009 www.catholique.org/news. Accessed 12 July 2009. Clavreul, Laetitia. 2014. “1500 personnes dans un Г©tat proche de celui de Vincent Lambert.” Le Monde, 14 February. http://www.lemonde.fr/sante/article /2014/02/14/1500-personnes-dans-un-etat-proche-de-celui-de-vincent-lambert_4366808_1651302.html?xtmc=euthanasie&xtcr=5 Clavreul, Laetitia. 2014. “Vincent Lambert et BonnemaisonВ .В .В . deux affaires qui saisissent l’opinion.” Le Monde 26 June. http://www.lemonde.fr /societe/article/2014/06/26/bonnemaison-vincent-lambert-deux-affaires-qui-saisissent-l-opinion_4445970_3224.html#eZ3Uij7VpY3ScUGc.99 “Le duel.” 2005. “La loi doit-elle totalement dГ©pГ©naliser l’euthanasie?” Fernsehshow von Paul Wermus. VSD. Transcription available. http://www.vsd.fr/contenu_editorial/pages/magazine/kiosque/duel/duel192.php

Page 269 →Europe 1. 2014. “Vincent Lambert: le Conseil d’État nomme trois experts.” 26 February. http://www.europe1.fr/France/Vincent-Lambertle-Conseil-d-Etat-nomme-trois-experts-1813449/. Accessed 26 February 2014. Favereau, Eric. 2015. “Pourquoi ne pas avoir attendu le deces naturel.” LibГ©ration, 12 October. http://www.liberation.fr/france/2015/10/21/pourquoi-ne-pasavoir-attendu-le-deces-naturel_1407901 France Catholique. 2006. “Le lobby de l’euthanasie Г l’hГґpital.” 27 October. http://www.france-catholique.fr/3044-Le-lobby-de-l-euthanasie-al.html. Accessed 12 July 2009. FrГ©our, Pauline. 2011. “Le SГ©nat refuse de lГ©galiser l’euthanasie.” Le Figaro, 26 January. http://www.lefigaro.fr/actualite-france/2011/01/25 /01016-20110125ARTFIG00478-le-texte-sur-l-euthanasie-vide-de-sa-substance.php GГ©nГ©thique. 2007. “Avortement et euthanasie: campagnes prГ©fabriquГ©es.” 22 March. http://www.genethique.org/?q=node/5174&dateyear=200703. Accessed 28 June 2014. Humbert, Marie. 2007. “Le choix de Vincent, mon combat.” Le Figaro, 15 October. http://www.lefigaro.fr/debats/2006/03/20 /01005-20060320ARTFIG90272-le_choix_de_vincent_mon_combat.php Kouchner, Bernard. 2008. “L’euthanasie fait dГ©bat au sein du gouvernement.” Interview. Le Figaro, 19 March. http://www.lefigaro.fr/actualites/2008 /03/19/01001-20080319ARTFIG00459-bernard-kouchner-apporte-son-soutien-a-chantal-sebire.php?cmtpage=6#comments-20080319ARTFIG00459. Accessed 28 June 2014. Leclair, AgnГЁs. 2011. “La polГ©mique sur l’euthanasie relancГ©e au SГ©nat.” Le Figaro, 26 January. http://www.lefigaro.fr/politique/2011/01/24 /01002-20110124ARTFIG00732-la-polemique-sur-l-euthanasie-relancee-au-senat.php Le Figaro. 2008. “Euthanasie: Leonetti s’exprime.” 3 March. http://www.lefigaro.fr/flash-actu/2008/03/13/01011-20080313FILWWW00554-demande-deuthanasie-leonetti-s-exprime.php Le Figaro. 2009. ‟Soins palliatifs et euthanasie: le dГ©bat relancГ©.” 27 November. http://sante.lefigaro.fr/actualite/2009/11/27/9914-soins-palliatifseuthanasie-debat-relance Le Figaro. 2013a. “Fin de vie: le dГ©bat sur le suicide assistГ© est relancГ©.” 16 December. http://www.lefigaro.fr/actualite-france/2013/12/16 /01016-20131216ARTFIG00518-fin-de-vie-le-debat-sur-le-suicide-assiste-est-relance.php. Accessed 16 December 2013. Le Figaro. 2013b. “La confГ©rence de citoyens prГ©conise une вЂlГ©galisation du suicide mГ©dicalement assistГ©.’” 16 December. http://www.lefigaro.fr/flash-actu/2013/12/16/97001-20131216FILWWW00382-la-conference-de-citoyens-preconise-une-legalisation-du-suicide-medicalementassiste.php?pagination=7 Le Figaro. 2014a. “Fin de vie: Touraine veut un projet de loi вЂavant la fin de l’étГ©.’” Page 270 →13 February. http://www.lefigaro.fr/actualite-

france/2014/02/13/01016-20140213ARTFIG00442-fin-de-vie-touraine-veut-un-projet-de-loiavant-la-fin-de-l-ete.php. Accessed 13February 2014. Le Figaro. 2014b. “Fin de vie quand les mГ©decins s’interrogent sur la future loi.” 25 February. http://www.lefigaro.fr/actualite-france/2014/02/25 /01016-20140225ARTFIG00315-fin-de-vie-quand-les-medecins-s-interrogent-sur-la-future-loi.php L’Express. 2007. “Marie Humbert, IcГґne de l’euthanasie.” 8 Marc. http://www.lexpress.fr/actualite/societe/icone-de-l-euthanasie_463333.html. Accessed 28 June 2014. LibГ©ration. 2008a. “En parler, Editorial.” 25 March. LibГ©ration. 2008b. “Tapage nocturne Г l’hГґpital: faut-il mГ©diatiser l’euthanasie?” 30 March. Le Monde. 2005a. “La proposition de loi sur la fin de vie adoptГ©e aprГЁs un dГ©bat houleux au SГ©nat.” 13 April. http://www.lemonde.fr/societe/article /2005/04/13/en-france-la-proposition-de-loi-sur-la-fin-de-vie-a-ete-adoptee-apres-un-debat-houleux-au-senat_638473_3224.html. Accessed 28 June 2014. Le Monde. 2005b. “Le SГ©nat adopte le droit au вЂlaisser mourrir.’” 13 April. http://www.lemonde.fr/societe/article/2005/04/13/le-senat-adopte-ledroit-au-laisser-mourir_638387_3224.html. Accessed 28 June 2014. Le Monde. 2008. “Libre de mourir.” 14 April. http://www.lemonde.fr/idees/article/2008/04/28/libre-de-mourir-par-jean-paul-delevoye_1039318_3232.html Le Monde. 2012. “La question de la fin de vie n’appartient pas aux mГ©decins.” 18 July. http://www.lemonde.fr/sante/article/2012/07/18/la-question-dela-fin-de-vie-n-appartient-pas-aux-medecins_1735072_1651302.html Le Monde. 2015. 15 June. http://www.lemonde.fr/idees/article/2015/06/15/la-nouvelle-loi-leonetti-ne-resout-pas-les-defauts-legislatifs-de-fin-devie_4654447_3232.html?xtmc=fin_de_vie&xtcr=26. Accessed 18 December 2016. “Loi sur la fin de vie: Le SГ©nat adopte aussi.” 2016. Le Figaro, 27 January. http://www.lefigaro.fr/flash-actu/2016/01/27/97001-20160127FILWWW00458loi-sur-la-fin-de-vie-les-senateurs-l-adoptent.php Mallevo, Delphine de. 2014. “Lambert: une nouvelle expertise mГ©dicale ordonnГ©e.” Le Figaro, 14 February. http://www.lefigaro.fr/actualite-france/2014 /02/14/01016-20140214ARTFIG00381-lambert-une-nouvelle-expertise-medicale-ordonnee.php. “Marie Humbert, l’amour d’une mГЁre.” 2007. Documentary of TF1. 3 December. Nau, Jean-Yves. 2015. “Affaire Vincent Lambert: trois leГ§ons d’une tragГ©die sans prГ©cГ©dent.” Le Figaro, 21 July. http://www.lefigaro.fr/vox /societe/2015/07/21/31003-20150721ARTFIG00238-affaire-vincent-lambert-trois-lecons-d-une-tragedie-sans-precedent.php Nouvel Observateur. 2007. “Nous, soignants, avons, en conscienceВ .В .В . Petition Page 271 →of the medical Staff.” 2 April 2.

http://tempsreel.nouvelobs.com/societe/20070306.OBS5521/nous-soignants-avons-en-conscience.html PГ©lГ©rin info. 2008. “Euthanasie: trios questions Г Leonetti.” 26 March. Scheffer, Nicolas. 2016. “Fin de vie: les modalitГ©s des вЂdirectives anticipГ©es’ publiГ©es.” SociГ©tГ©, 5 August. http://www.lemonde.fr/societe /article/2016/08/05/fin-de-vie-les-modalites-des-directives-anticipees-publiees_4978609_3224.html?xtmc=fin_de_vie&xtcr=3 Zenit. 20o7. Le monde vu de Rome, “Plus de 17 000 signatures contre le lobby de l’euthanasie Г l’hГґpital.” 21 March. http://www.zenit.org/fr /articles/france-plus-de-17-000-signatures-contre-le-lobby-de-l-euthanasie-a-l-hopital

Data Archive I group here various secondary data materials, dictionaries, and notes from courses and colloquiums that I attended between 2005 and 2016. They were not a primary object of my analysis but contributed to the general embedding of the issues at stake.

General Sources Ascension Health. Information server about health care. http://www.ascensionhealth.org/ethics/public/issues/patient_self.asp. Accessed 1 August 2009. Belgium Association pour le Droit de Mourir dans la Dignité (ADMD). www.admd.be CESSDA. New Pan-European Research Infrastructure. http://www.cessda.org/. Accessed 30 June 2009. “Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine.” 1997. Oviedo. 4 April. Council of European Social Science. 1997. Data archives. “Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine.” 4 April. http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm. Accessed 28 June 2013. De Nederlandse Vereniging voor Vrijwillige Euthanasie. http://www.nvve.nl/nvve2/pagina.asp?pagkey=72046. Accessed August 17, 2009. Dignitas. “Menschenwürdig leben—Menschenwürdig sterben.” www.dignitas.ch. Accessed 24 April 2014. Dying Matters. British online network for hospice advisory services. http://www.dyingmatters.org/. Accessed 24 April 2014. European Court of Human Rights. 2002. “Press Release Issued by the Registrar, Case of Pretty v. the United Kingdom Given Priority by European Court.” 23 January. http://cmiskp.echr.coe.int//. Accessed 10 August 2006.

European Court of Human Rights. 2002. Press release issued by the Registrar. Page 272 →Chamber Judgment in the Case of Pretty v. The United Kingdom. 235, 29 April. http://cmiskp.echr.coe.int//. Accessed 10 August 2006. European Pain in Cancer Survey. www.epicsurvey.com. Accessed 30 July 2009. European Project on Pain Research. http://www.paineurope.com/index.php?q=en/book_page/patient_knowledge. Accessed 30 July 2009. Eurostat. http://europa.eu.int/comm/eurostat. Accessed 30 June 2009. EX-International. www.exinternational.ch. Accessed 24 April 2014. EXIT—ADMD Suisse Romande. www.exit-geneve.ch. Accessed 24 April 2014. EXIT—Vereinigung fГјr humanes Sterben (deutschsprachige Schweiz). www.exit.ch. Accessed 24 April 2014. Final Exit. “Films, Made for TV Dramas, TV Documentaries and Videos Dealing with Dying and Euthanasia.” http://www.finalexit.org /assisted_suicide_in_the_movies.html. Accessed 12 February 2014. Hospice History Programme. http://www.hospice-history.org.uk/. Accessed 1 August 2009. Huainigg, Franz-Joseph. 2006. “Auf der Seite des Lebens.” Commentary. Die Presse, 23 December. http://diepresse.com/home/meinung/gastkommentar /59361/Auf-der-Seite-selbstbestimmten-Sterbens. Accessed 28 June 2013. INED. “Current Project of the Institute of Demographic Studies (INED) on Impact of Increased Age on End-of-Life Situations.” http://www.ined.fr/fr /recherches_cours/projets_recherche/projets_phares/bdd/projet/P0517/. Accessed 30 June 2009. International Observatory on End of Life Care. http://www.eolc-observatory.net/policyevaluation/index.htm. Accessed 1 August 2009. Nederlandse Vereniging voor een Vrijwillig Levenseinde (NVVE). www.nvve.nl. Accessed 24 April 2014. OECD. 2008. “Les personnels de santГ© dans les pays de l’OCDE: Comment rГ©pondre Г la crise imminente.” http://www.oecd.org/fr/els/systemessante/41511074.pdf. Accessed 28 June 2014. Public Health Wales, International Observatory on End of Life Care. 2013. “End of Life Care Review.” January. http://www.eolc-observatory.net /policyevaluation/index.html. Accessed 1 August 2009. Recht op Waardig Sterven (RWS). Belgium right-to-die movement. www.rws.be. Accessed 24 April 2014. Second International Palliative Congress. 2007. Friedrichshafen, German, 26–28 June. http://www.hospiz.at/index.html?http://www.hospiz.at/dach

/palliativecare_kongress_friedrichshafen2007.htm Steinmetz Archive, Nesstar catalog. 2004. “Dataset: Expectations for the Future 2004, Part Concerning Health and Care. http://nesstar.steinmetz-archief.nl /webview/index.jsp?object=http://nesstar.steinmetz-archief.nl:80/obj/fVariable/P1649_V319. Accessed 13 June 2009. UNESCO. “Future Vision of UNESCO’s Bioethics Programme.” 2013. http://unesdoc.unesco.org/images/0022/002228/222887e.pdf. Accessed 15 June 2014. Virtual Hospice, Canada. http://www.virtualhospice.ca/. Accessed 24 April 2014. Page 273 →Wiesemann, Claudia. 2005. Professor of Ethics and History of Medicine. Radio discussion on “Active Euthanasia.” University GГ¶ttingen, Deutschlandfunk, 26 October. World Health Organization. 2014. “Global Atlas on Palliative Care at the End of Life.” http://www.who.int/cancer/publications/palliative-care-atlas/en/. Accessed 15 June 2014.

Belgium American Thinker. 2014. “Pro Death Insanity Envelops Belgium.” 22 January. http://www.americanthinker.com/2014/01/prodeath_insanity_envelops_belgium.html. Accessed 3 February 2014. Slawson, Nicola, and Agencies. 2016. “Terminally Ill Child First to be Helped to Die in Belgium.” The Guardian, 17 September. https://www.theguardian.com/society/2016/sep/17/terminally-ill-child-first-helped-to-die-belgium. Accessed 1 December 2016. Patient Rights Council. “Euthanasia in Belgium: 10 Years on European Institute of Bioethics, Brussels.” http://www.ieb-eib.org/en/pdf/20121208-dossiereuthanasia-in-belgium-10-years.pdf. Accessed 3 February 2014.

Italy Luca Coscioni. http://www.lucacoscioni.it/. Accessed 17 August 2009.

Luxembourg Associated Press. 2008. “Luxembourg Strips Monarch of Legislative Role.” The Guardian, 11 December. https://www.theguardian.com/world/2008/dec/12 /luxembourg-monarchy. Accessed 21 November 2012. Spiegel Online. 2008. “Grand Duke of Luxembourg Will Lose His Veto.” 4 December. http://www.spiegel.de/international/europe/euthanasia-controversygrand-duke-of-luxembourg-will-lose-his-veto-a-594398.html. Accessed 21 November 2012.

Netherlands de Jong, Petra M. 2012. “How the Dutch AreВ Different.” New York Times, 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americansbalk-at-euthanasia-laws/how-the-dutch-are-different-when-it-comes-to-euthanasia-and-assisted-suicide. Accessed 21 November 2012. Het Parool. “Slapend sterven zonder pijn.” 7 December 2005. Nederlandse Vereniging voor een Vrijwillig Levenseinde. http://www.nvve.nl/over-nvve/organisatie/. Accessed 11 February 2014. Page 274 →

Switzerland Blick. “Absurder Streit: Puff nein Sterbehilfe Ja.” http://www.blick.ch/news/schweiz/puff-nein-sterbehilfe-ja-85086. Accessed 13 August 2009. Climage. 2005. “Exit: Fernand Malgar.” http://www.climage.ch/qsPortal/Home.asp?N=696. Accessed 25 June 2014. Dignitas. “Unsere Arbeit vom 1. Januar 2004 bis zum 31. Dezember 2014.” http://www.dignitas.ch/images/stories/pdf/bericht-jahr-2004.pdf. Accessed 25 July 2015. Minelli, Ludwig A. 2005. “Selbstbestimmungsrecht ist ein Menschenrecht.” Interview. Berliner Zeitung, 22 October. http://www.dignitas.ch/media_dignitas /Selbsttoetung%20ist%20ein%20Menschenrecht.pdf. Accessed 17 August 2009. Minelli, Ludwig A. 2008. “Ludwig Minelli: Wenn Sie das trinken, gibt es kein zurГјck.” Interview. 29 March. http://www.tagesspiegel.de/weltspiegel /dignitas-chef-minelli-im-interview-wenn-sie-das-trinken-gibt-es-kein-zurueck/1198414.html. Accessed 17 August 2009. Minelli, Ludwig A. 2009. “Tod auf Bestellung.” Lecture, Zofingerhaus, St. Gallen, 16 April. http://www.dignitas.ch/WeitereTexte /Tod_auf_Bestellung16.4.2009.pdf. Accessed 17 August 2009. Norddeutscher Rundfunk. 2005. “Redezeit—Sterbehilfe menschenwГјrdig oder inhuman?” Radio discussion, 5 October. With Ludwig A. Minelli, director, Dignitas, Ralph Charbonnier, Center for Health Ethics, Cornelia Goesmann, vice president of the German Medical Association (Deutsche BundesГ¤rztekammer), Eugen Brysch, director of Hospiz-Stiftung, Berlin. http://www.dignitas.ch/index.php?option=com_content&task=view&id=97&Itemid=145. Accessed 17 August 2009. Spiegel Online. 2008. “Neue вЂDignitas’-Methode: Sterbehilfe mit dem Plastiksack.” 3 March. http://www.spiegel.de/panorama/neue-dignitas-methodesterbehilfe-mit-dem-plastiksack-a-542207.html. Accessed March 18, 2014. SГјddeutsche Zeitung. 2011. “Was einem den Atem nimmt: Der Dignitas-Chef und die mit Helium geleistete Sterbehilfe.” 17 May. http://www.sueddeutsche.de/politik/was-einem-den-atem-nimmt-1.282601. Accessed March 22, 2009.

United Kingdom BBC. 2016. 17 September. http://www.bbc.com/news/world-europe-37395286. Accessed 1 December 2016. BBC. 2016. 15 December. http://www.bbc.com/sport/disability-sport/38306504. Accessed 15 December 2016. Compassion in Dying, UK. http://www.compassionindying.org.uk/. Accessed 11 February 2014. The Guardian. 2016. 6 October. https://www.theguardian.com/healthcare-network/2016/oct/06/patient-dignitas-assisted-dying-legal-uk. Accessed 1 December 2016. Page 275 →The Guardian. 2016. 7 October. https://www.theguardian.com/society/2016/oct/07/desmond-tutu-assisted-dying-world-leaders-should-take-action. Accessed 1 December 2016. The Guardian. 2016. 12 October. https://www.theguardian.com/world/2016/oct/13/netherlands-may-allow-assisted-dying-for-those-who-feel-life-is-complete. Accessed 1 December 2016. The Guardian. 2016. 20 October. https://www.theguardian.com/uk-news/2016/oct/20/woman-who-imported-euthanasia-kit-took-her-own-life-inquest-rules. Accessed 1 December 2016. The Guardian. 2016. 16 November. https://www.theguardian.com/society/2016/nov/17/voluntary-euthanasia-laws-clear-hurdle-in-south-australian-parliament-after15th-attempt. Accessed 1 December 2016. The Guardian. 2016. 4 December. https://www.theguardian.com/australia-news/2016/dec/04/philip-nitschke-launches-militant-campaign-for-unrestricted-adultaccess-to-peaceful-death. Accessed 8 December 2016. The Guardian. 2016. 6 December. https://www.theguardian.com/society/2016/dec/07/victoria-likely-to-hold-conscience-vote-on-legalised-assisted-dying. Accessed 8 December 2016. The Guardian. 2016. 8 December. https://www.theguardian.com/society/2016/dec/08/voluntary-euthanasia-victoria-flags-rigorous-review-before-laws-introduced. Accessed 8 December 2016. The Guardian. 2016. 10 December. https://www.theguardian.com/society/2016/dec/10/man-urges-mps-to-back-assisted-dying-before-ending-his-life-at-dignitas. Accessed 10 December 2016. Pratchett, Terry. 2010. “Terry Pratchett: My Case for a Euthanasia Tribunal.” The Guardian, 2 February. http://www.theguardian.com/society/2010/feb/02 /terry-pratchett-assisted-suicide-tribunal. Accessed 21 July 2014.

United States

American Cancer Society. 2014. http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/hospicecare/hospice-care-hospice-care. Accessed 21 January 2014. Ascension Health. Information server about health care. http://www.ascensionhealth.org/ethics/public/issues/patient_self.asp. Accessed 1 August 2009. CNN. 2016. 17 September. http://edition.cnn.com/2016/09/17/health/belgium-minor-euthanasia/. Accessed 1 December 2016. Compassion and Dignity, Washington. http://www.compassionandchoices.org/cid/. Accessed 12 July 2009. Death with Dignity. http://www.deathwithdignity.org. Accessed 12 July 2009. Ethics in Clerkships. 2014. “Topics: Assisted Suicide.” Chicago Medical School, Department of Ethics. 18 January http://www.uic.edu/depts/mcam/ethics /suicide.htm#topic1. New York Times. 2012. “Why Do Americans Balk at Euthanasia Laws.” Room for Debate. 10 April. Page 276 →New York Times. 2012. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws New York Times. 2010. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws/how-the-dutch-are-differentwhen-it-comes-to-euthanasia-and-assisted-suicide New York Times. 2012. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws/comfort-familiarity-and-assistedsuicide-laws New York Times. 2012. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws/too-many-flaws-in-assistedsuicide-laws New York Times. 2012. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws/address-inequalities-beforelegalizing-assisted-suicide New York Times. 2012. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws/underlying-skepticism-ofprescribed-suicide New York Times. 2012. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws/the-role-of-religion-in-assistedsuicide-and-voluntary-euthanasia-laws New York Times. 2012. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws/assisted-suicide-laws-are-a-recipefor-elder-abuse

New York Times. 2012. 10 April. http://www.nytimes.com/roomfordebate/2012/04/10/why-do-americans-balk-at-euthanasia-laws/euthanasia-and-the-power-of-theculture-war. Accessed 25 July 2014. New York Times. 2012. “Suicide by Choice? Not So Fast.” 31 October. http://www.nytimes.com/2012/11/01/opinion/suicide-by-choice-not-so-fast.html? _r=0. Accessed 21 November 2012. New York Times. 2014. 31 July. https://www.nytimes.com/2014/08/01/world/europe/french-families-challenge-doctors-on-wrenching-end-of-life-decisionsmedicalized-hospital-deaths.html. Accessed 30.12. 2016. New York Times. 2014. 1 August. www.nytimes.com/2014/08/01/world/europe/french-families-challenge-doctors-on-wrenching-end-of-life-decisions-medicalizedhospital-deaths.html?_r=0} New York Times. 2016. 29 April. http://www.nytimes.com/2016/04/30/opinion/aid-in-dying-a-good-or-a-harm.html?rref=collection%2Ftimestopic% 2FEuthanasia&action=click&contentCollection=timestopics®ion=stream&module=stream_unit&version=latest&contentPlacement=10&pgtype=collection. Accessed 1 December 2016. New York Times. 2016. 6 June. http://www.nytimes.com/2016/06/10/us/assisted-suicide-california-patients-and-doctors.html?rref=collection%2Ftimestopic% 2FEuthanasia&action=click&contentCollection=timestopics®ion=stream&module=stream_unit&version=latest&contentPlacement=8&pgtype=collection. Accessed 1 December 2016. Page 277 →New York Times. 2016. 9 June. http://www.nytimes.com/2016/06/10/us/assisted-suicide-california-patients-and-doctors.html?rref=collection% 2Ftimestopic% 2FEuthanasia&action=click&contentCollection=timestopics®ion=stream&module=stream_unit&version=latest&contentPlacement=8&pgtype=collection. Accessed 1 December 2016. New York Times. 2016. 10 October. http://www.nytimes.com/2016/10/10/opinion/aid-in-dying-movement-advances.html?rref=collection%2Ftimestopic% 2FEuthanasia&action=click&contentCollection=timestopics®ion=stream&module=stream_unit&version=latest&contentPlacement=5&pgtype=collection. Accessed 1 December 2016. New York Times. 2016. 13 October. http://www.nytimes.com/2016/10/14/world/europe/dutch-law-would-allow-euthanasia-for-healthy-elderly-people.html? rref=collection%2Ftimestopic% 2FEuthanasia&action=click&contentCollection=timestopics®ion=stream&module=stream_unit&version=latest&contentPlacement=4&pgtype=collection. Accessed 1 December 2016. New York Times. 2016. 5 November. http://www.nytimes.com/2016/11/05/opinion/on-assisted-suicide-going-beyond-do-no-harm.html?rref=collection% 2Ftimestopic% 2FEuthanasia&action=click&contentCollection=timestopics®ion=stream&module=stream_unit&version=latest&contentPlacement=3&pgtype=collection&_r=0. Accessed 1 December 2016.

Oregon Death with Dignity Act. http://egov.oregon.gov/DHS/ph/pas/index.shtml. Accessed 12 July 2009. Oregon Health Authority. “Death with Dignity Act.” http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct /Pages/index.aspx. Accessed 21 January 2014. Oregon Public Health Division. 2012. “Annual Report on Death with Dignity Act.” http://public.health.oregon.gov/ProviderPartnerResources /EvaluationResearch/DeathwithDignityAct/Documents/year15.pdf. Accessed 21 January 2014. Patient Rights Council. “Assisted Suicide Laws in the United States.” http://www.patientsrightscouncil.org/site/assisted-suicide-state-laws. Accessed 28 August 2013. Patient Rights Council. “Massachusetts Compassionate Care for the Terminally Ill Act (H 1998).” http://www.patientsrightscouncil.org/site/massachusettslatest-doctor-prescribed-suicide-bill/. Accessed 28 August 2013. Terri Schiavo Life and Hope Network. http://www.terrisfight.org/. Accessed 3 February 2014. US National Archive on Computerized Data on Aging (NACDA). http://www.icpsr.umich.edu/NACDA/index.html. Accessed June 30, 2009.

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Index acknowledgment of emotional experience, 2–7, 12, 40–42, 61, 105, 140–142, 208 activist, 6, 15, 18, 23, 53–55, 85–87, 200 Czech, 24, 62, 154–158 French, 29, 121, 140 right-to-die, 20 affect, 9, 248, 249, 253, 259, 262 Agamben, Giorgio, 59 agency, 21, 35 Ahmed, Sarah, 39–45 anthropology, 26, 61 anticommunist, 147–148 argument (analytical category), 16, 21, 40, 49, 51, 61–64, 84–86, 127, 130–136, 144, 159 argumentative strategies, 4, 12, 16, 22, 36, 61, 96, 117, 200, 254 Ariès, Philippe, 46, 98–99 Assemblée Nationale, 27, 102–108, 114–115, 281 assisted suicide, 3–7, 16–17, 21–29, 33–35, 50, 60, 103, 130–135, 144–147, 181–196, 209 Association pour le Droit de Mourir dans la Dignité (ADMD), 92, 102–105, 116–128, 138 Austin, John, 51, 246 Austria, 4, 183–184 authenticity, 56, 248 authorities erosion of, 56, 60 state authorities, 11, 22–24, 40, 101, 112, 191, 196, 197, 200–206 autonomy, 1–23, 26, 34–36, 40, 50–60, 135–147, 150–156, 170, 181–196, 200–203, 212 awareness methodological category, 70–72, 75–77, 81 barbiturate, 27, 28, 123, 209

BarЕЎa, Pavel, 148 Belgium, 5, 24, 50, 97, 103, 125, 132–135, 158, 185, 214, 273 Benveniste, Emile, 77 Bevir Mark, 60, 247 bioethical, 24–25, 53–55, 98–102, 128, 147, 174 biopolitics, 54, 206 body, 17, 46–54, 59, 97, 139, 166, 210, 258, 261, 264 Boltanski Luc, 263 border, 5, 22–24, 50, 54, 141, 145, 196, 200–201 borderline, 55, 59, 101, 190 boundary, 2–4, 15–17, 22–26, 41, 44, 200–201 Bourdieu, Pierre, 248 Braidotti, Rosi, 42 Butler Judith, 248 Canada, 3–5, 21, 25 care terminal, 15, 101, 113, 152, 195, 210 unit, 32, 54, 84, 105, 156, 172, 178, 189, 192, 201, 266 caregiver, 70, 73, 74, 161, 168, 178 ceremony, 46–47, 150, 168, 180 Cesta domЕЇ, 6, 32 See also Homecoming Chabot, Jean, 20 Chanel, Chantal, 27, 103, 117–121 Page 280 →Charaudeau, Patrick, 83, 249 Chaussoy, FrГ©dГ©ric, 27, 103, 105, 113–121, 137, 249 Chirac Jacques, 26, 28, 131 Chomsky, Noam, 249 church, 91

citizen conference, 11, 61, 132, 133, 198 empowerment of, 123–129, 134 engagement, 2–5, 35, 51, 56–62, 84, 92–96, 124, 161, 188, 203–206 forum, 29, 139–141 ignorant, 70, 110, 113, 118, 119, 207 civilization, 15, 94, 143, 148, 150, 183 Clark, David, 210 Clavreul, Laetitia, 133, 268 Clayes-Leonetti Law, 30, 90, 138, 140, 198 Colebatch, Hal, 11 collective action, 10, 52 decision, 5, 112, 140 general concept, 2–5, 27, 46–49, 203–205 values, 2, 9, 10, 12, 202, 205 communication contract, 67, 77, 82–91, 106, 111–114, 174 forms of, 166, 167, 172–180 gap, 127, 191 general framework to address it, 3, 27, 45, 52–67, 101, 167 insufficient, 165 intimate, 167, 203 nonverbal, 134 stereotype, 65, 85, 146 communism, 147, 249 comparison, 13, 155, 184, 201 comparative, 11, 207, 257 compassion

concept, 2, 40–48, 56–57, 259 value, 26, 51, 89, 94, 104, 115, 118–120, 187, 196 compassion in dying, 18 configuration, 6, 13, 44, 55, 66–67, 85 Connolly, W. E., 8, 42, 249 Conseil d’Etat, 30, 136 conservative, 3, 27, 33, 102, 111, 130, 159 context cultural, 46, 52, 72 methodological category, 69–70, 81–88 national, 26, 31, 69, 156 social, 52, 146 convention methodological category, 69–70, 81–88 conventional, 64–66, 84, 102, 112–116, 128, 179–180, 195, 207–208 co-pay (regulation fee), 34, 149, 152 critical, 43 critique, 6, 50, 89, 90, 122–127, 131, 136, 185, 191 Cruzan, Nancy, 19 culture general category, 39, 45, 98, 197, 202 organizational, 195 political, 93, 202 Czech Republic health institutions of, 150–153, 156, 195 institutions, 35, 155, 160, 185 political parties, 33, 159 postcommunist background of, 147–150 Dean, Mitchell, 56–57

death and dying general framework of, 2–7, 15–26, 202–207 history of, 15–21 online, 32, 102, 145, 158, 169–178, 193 rites, 46 death with dignity, 24, 28 Death with Dignity Act (Oregon), 18, 19, 210 Death with Dignity Law (Czech Republic), 33, 35, 144, 159, 184, 188, 266 deliberative, 15 democratic decision-making, 197 discussion, 184 liberal, 1–17, 21–26, 35, 40, 53, 58–59, 69, 90–96, 140, 203–205 society, 53, 202 demography, 16, 96, 101 de-politicized, 148 Dignitas, 23–24, 54, 190, 209–210 Dijon, 28 discourse analysis, 13–14, 42–45, 51–52, 59–60, 64, 206–208 definition, 7, 13–14, 69–70, 81–88, 206–208 media, 46, 103, 110, 148 discourse linguistics, 11, 82 Doctors without Borders, 102 Douglas, Mary, 26, 46, 61, 251 Page 281 →Durkheim, Г‰mile, 26 Dutch Voluntary Euthanasia Society, 18 Dworkin, Ronald, 15, 59, 212 emancipating/emancipatory, 42, 96, 101, 134–135, 194, 199, 208

emotion methods, 70–80 theoretical background, 39–69 emotional experience analysis of, 81–88 general framework, 1–15, 197–208 empathy, 2, 26, 40–48, 54–56, 74, 104–15, 166, 173, 196 end-of-life choices general, 2–3, 40–45, 47, 145, 201–205 Enlightenment, 62 equality, 94–95 ethical arguments, 139, 141, 196, 198 committees, 104, 130 debates, 115, 126 values, 19, 200, 202 See also bioethical European Court of Human Rights, 22, 90, 136 European Institute of Bioethics, 132 European Values Study, 93 euthanasia active, 4, 6, 24, 27, 36–37, 92, 104, 132, 185, 211 history of, 17–20, 49 passive, 184, 209 Euthanasia-Good Death, EDS (Eutanazie-Dobrá Smrt), 5–6, 24, 33–37, 50, 71, 144–147, 155, 159, 181–196, 205 evidence, 7, 13–14, 34, 70, 72, 140, 155, 197, 200 expert knowledge, 35, 53 medical, 17, 30, 55, 106, 113, 119, 138, 180, 201

theoretical concept, 55–57, 199–200 expertise, 39, 55, 61, 107, 109, 135–137, 180, 200 Facebook, 147, 184, 191 Fassin, Didier, 95, 101, 102 fieldwork, 10, 14, 65, 70, 71–74, 86, 91 Figaro, 29, 92, 99, 103, 129, 137 Fillon, François, 100, 130 films on end of life, 25 Fischer, Frank, 11 Fischer, Petr, 86 Foucault, Michel, 8, 44, 54, 206 France health care system of, 96–99 institutional background, 91, 93–96, 100–102 freedom, 5, 95, 105, 109, 112, 140, 181–182, 191, 195 Germany, 4, 23, 24 global, 3, 9, 22, 36, 49, 51, 53, 71, 200–207 good death, 19, 49, 157 Gottweis, Herbert, 24 Gould, Deborah, 9 governance, 60, 63 governing general framework, 39, 41–42, 200–207 process, 7, 21, 39, 40, 42, 56, 204, 205 regime, 90 government, 85, 100, 150, 186, 198 Grenoble, 133 grief, 11, 45, 64, 150, 208 habitus, 46

HamerskГЅ, Milan, 33, 158, 159, 184, 185, 191 Havel, VГЎclav, 188 Hennezel, Marie de, 98, 101, 106–109, 111, 120, 126 Hippocratic oath, 16, 130, 212 Hirsch, Emmanuel, 100, 106, 111 Hochschild, Arlie, 9 Hollande, FranГ§ois, 29, 131 home care, 150, 166, 167, 178–179 concrete place, 28, 76, 78, 132, 145, 163 discourse, 80, 150, 155–157, 167–170, 176, 190–193, 196, 202, 208 Homecoming (Cesta DomЕЇ) history of, 32, 33 institutionalizing home care, 178–179, 190–193 web forum, 76, 169, 173–174, 176–177, 179–180 hospice care, 23, 48, 73, 178, 210, 211 hospital Czech, 143, 156–157, 164, 167–170, 173, 179, 181, 190–191 French, 110–112 general, 2, 7, 19, 32, 33, 43, 73–74, 80, 212 Page 282 →HospodГЎЕ™skГ© Noviny, 183 Howarth, David, 11, 42, human rights, 17 Humbert, Marie, 26–27, 105, 113, 114, 118–119, 121 Humbert, Vincent, 26–28, 31, 87, 90, 91, 102–105, 113–116, 121–129, 197 ideological, 2–3, 8, 10, 12, 21, 26, 61, 103, 105, 148, 195 imaginary, 161, 178, 185, 191 individual actors, 11

dimension, 45, 115, 147 general concept, 39–45 rights, 2, 9, 10, 12, 202, 205 individualization, 19, 21 individualized, 1, 16–19, 22, 25, 58, 59, 103, 200 information mission, 70, 133, 139 Inglehart, Roland, 17 inquiry general, 35, 71, 75–87 interpretive, 66 parliamentary, 113–115 survey, 154 institution enlightened, 21, 31, 105, 111, 112 governing process of, 56, 59, 206 implacable, 70, 95, 155, 168, 179, 181, 193, 195 political, 5, 7, 10, 22, 42, 93, 140, 196, 201 relationship to individual, 26, 40–41, 54, 63, 74, 82, 97, 122, 144–145, 176, 190 institutionalized practice, 63–67, 72, 81, 82, 96, 106, 113, 145, 182 international political theory, 10, 12, 202 international relations, 39 interpretive analysis, 6–7, 13, 60–70, 72, 77, 207–208 policy analysis, 39, 60 research, 7–11, 13, 43, 57, 70–71 interviews Czech Republic, 144, 145, 152, 154, 156, 162, 163 experts, 92, 98, 147 France, 92, 107, 127, 128

methodological, 7, 70–73, 77–81, 87 intimacy implications beyond end of life, 202–207 invention, 64, 66 irrational, 48, 61, 62, 198 Italy, 4, 25, 159 Juncker, Jean-Claude, 21 Kaufmann, Sharon, 47 Kennedy, James C., 19–20, 211–212 Kevorkian, Jack, 18 killing, 27, 45, 50, 59, 127, 187, 212 knowledge ambivalence of, 42 analysis, 69–70, 81–88 emotional, 54, 77, 174, 178 intimate / on intimacy, 10, 52, 144, 147, 157, 171, 179 lack of, 169, 171 personal, 46 plurality, 58, 205 public, 19, 35, 177 sharing, 43, 55, 168 Kouchner, Bernard, 99, 102–103, 123 Kübler-Ross, Elisabeth, 15 Lambert, Vincent, 29–31, 90, 103–104, 117, 136–137, 197 language mode of, 51, 64–66, 82–85, 107, 112, 117 performativity of, 51 policy, 47 LDN, 32–33, 145, 156–157, 163, 166–168, 192

legal attempts, 4, 18, 33, 101–102, 130, 181–189 cases, 1, 88, 137 debates, 17–18, 20, 23, 32, 91, 99, 103, 115, 138, 154–155, 180 documents, 18 experts, 1, 23, 185 initiatives, 22, 50, 90, 158 values, 2, 67, 35, 114 legitimacy, 56–57, 62, 137, 186, 188, 199, 202, 206–207 Lemke, Thomas, 47 Leonetti, Jean, 27, 98, 106, 112, 120, 128, 130, 138 Leonetti Law, 27–30, 89–91, 103–106, 112, 117–119, 121–135, 138–139, 140, 198 Letellier, Philippe, 106 lethal injection, 17, 19, 27, 113 Page 283 →liberal democracy, 13, 21, 92, 93, 124, 200 liberalism, 144 LibГ©ration, 123 LidovГ© Noviny, 182, 184 living will, 35, 107 Luxembourg, 4, 21 Lyon, 133–134 Maingueneau, Dominique, 82 Manifesto of 2000, 103, 118–120, 125 meaning concept, 40–36, 49, 52, 64–65, 75–83, 87, 208 general, 106, 109, 112, 115, 120, 171, 177, 180 meaning-making, 173, 176 media coverage, 7, 39, 87, 92, 112, 115–117, 120–121, 134, 138–139, 144, 146 media discourse, 103, 110, 148

medical sociology, 101 Memmi, Dominique, 54, 57, 90, 91, 101 Mexican, 98 MF Dnes, 189, 192 modern background, 20, 22, 49, 55, 89, 93, 155 government, 203 individual, 2, 148 medicine, 100, 108, 158, 214 world, 94, 148, 150 modernity, 44, 148, 203 Monde, Le, 30, 92, 103, 122, 123, 133, 136 morality, 27, 40 Morano, Nadine, 108, 128 Mouffe, Chantal, 8, 42 mourner analytical category, 75–78, 161, 163, 165–167 forum, 175–176 inquiry of, 145–146, 162, 166, 172, 180, 207 narrative, 94–96, 123, 134, 147–149, 151, 155, 167, 173, 187, 190, 195, 197 national borders, 20, 22, 54, 200 context, 3, 10, 26, 31, 105, 197 debate, 23, 36, 138, 159 legislation, 24, 44, 53, 71, 211 survey, 93, 150, 154, 207 National Consultative Committee on Ethics, 29, 93, 131, 132, 133, 134 natural, 98, 111, 112, 183, 206, 212 negotiation

care, 70, 75, 162–163, 167–168, 177 fieldwork strategies, 76–77, 81 general, 10, 21, 35, 40, 49, 56, 123 intimacy, 161, 162, 176, 178–179 methodology, 82–83, 86, 87, 203, 207 political, 59, 60, 90–91, 127, 129, 133, 204 zone, 8, 9, 43–43, 45, 53, 199, 207 Nešporová, Olga, 150 Netherlands, 5, 18, 19, 20, 27, 132, 133, 136, 214 Nettleton, Sarah, 44, 58 New York Times, 15 NIMBYism, 132 nonprofit Czech, 143–144, 154, 158, 159, 169–170, 181, 190–195, 197, 199 French, 102, 135, 137 general, 7–8, 11, 17, 23, 25, 32, 36, 50, 71, 87 normal, 12, 43, 48, 54, 59, 65, 69, 147, 148, 175 normative, 2, 44, 64, 75, 80, 110, 111 norms, 54, 64, 64, 69, 109 Norval, Aletta, 11 Nouvel Observateur, 30, 92, 103, 118–121, 128 ODS, 33, 159 Ollivier, Florence, 94–95, 128 Oregon, 18, 19, 185, 210 Padioleau, Jean, 101 Pafko, Pavel, 188 pain analysis, 47, 48, 54, 109 feeling, 29, 45, 73–74, 108, 160, 178–179, 188–189

relief, 126, 172, 174, 190, 194, 210 palliative care centers, 105, 110, 156, 157, 176, 184, 192 conferences, 158 definition, 210, 211, 213, 214 discourse, 99, 106, 186, 188, 200, 207 practices, 46, 94, 100, 111, 121, 129, 144, 154, 155, 158 settings, 16, 29, 128, 158, 170 staff, 104, 106, 120, 133, 139 paradox, 59, 61, 109, 124, 128, 196 participation, 40, 149, 152, 212 Page 284 →paternalism, 99, 112, 123, 124, 206 policy analysis, 39, 43, 61, 222 formulation, 33, 147, 181 introduction, 39–45 procedure, 3, 5, 205 process, 4, 42, 66 regime, 12, 13, 49, 61, 62, 63, 66, 70, 140 studies, 60, 207 polity, 12, 41, 54, 56, 59–61, 66, 72, 174, 204, 205 Pool, Robert, 20, 210, 214 post-1968, 10, 17, 96 Postcommunist, 144, 147–151, 154–155, 197 Postma, Gertruda, 119 post-positivist, 43 poststructuralist, 8, 42, 43 power analysis of, 62–66

introduction to, 53–61 public, 5–8, 12, 21, 41–42, 57, 61, 98, 171, 191, 201–206 relation, 9, 43, 83, 199 Prague, 32, 158, 178, 211 Právo, 187 Pretty, Diane, 22–23 Process Périgueux, 27, 31, 90, 92, 103, 117–122, 129 protest, 83, 85, 90, 92, 117, 119, 121, 137, 140, 144 protest scene, 114–116 psychosocial, 9, 32, 110, 129, 144, 161–162, 166–167, 169, 171, 173, 189 public engagement, 149 public health discourse, 100, 101, 124, 149, 151, 169, 192 services, 19, 46, 70, 95, 100, 106, 11, 211 Quebec, 3, 21 Rancière, Jacques, 8, 42, 55 rational discourse, 5, 47, 98 rationality, 6, 8, 42, 203–205 reflexivity, 14, 59, 207 religion, 10, 15, 107, 116, 131, 150 representation, 10, 45, 52, 136 resilience, 2, 13 Respekt, 160, 192 respondent integrity, 57, 72, 76, 79, 81, 83 rhetorical figures metaphors, 13, 44, 84, 116, 127, 156, 178, 179, 198 symbols, 22, 28, 30, 65, 69, 82, 84, 85, 114 right-to-die movements, 15–20

Rosanvallon, Pierre, 95 Roseneil, Sasha, 44 Sampedro, Ramón, 25 Sarkozy, Nikolas, 28, 100, 122, 131 scenography, 82 Schiavo, Terri, 1, 51, 89, 159, 214 Sébire, Chantal, 28, 31, 87, 90, 92–93, 98, 103–104, 112, 117, 123–125, 127–129, 134, 141, 159, 197 security, 18, 54–55, 75, 95, 149, 152–153, 170, 189, 203, 211 self-chosen death, 2, 6–8, 16–20, 22–25, 27, 29, 33–34, 46–50, 58–59, 69, 90–98, 101, 103, 105, 108, 112–115, 120–122, 124–129, 131–132, 137–138, 140, 144, 155, 156–159, 184–188, 190, 192–193, 196–198, 200, 202, 204, 212 self-governing practices, 11, 42, 55–58, 174, 176, 193 Shildrick, Margrit, 47 Sicard, Didier, 29, 131, 133–135, 137, 141 Sicard Report, 29, 31, 90, 92, 93, 129, 131–141, 198, 205, 208 Sláma, Ondřej, 33, 48, 156, 158, 178, 210 slippery-slope, 15–16, 29, 97, 108, 129, 132, 138, 140, 158, 193–194, 203–204 society Western, 17, 51, 57, 85, 155, 202 sociology death and dying, 26, 101 political, 207 sociopolitical, 20, 41, 51–52, 59, 64, 70, 91, 143, 202 Spain, 25 stakeholders, 18, 53, 71, 127, 144, 152, 191, 196, 200, 203, 205–206, 208 state authorities, 11, 22, 24, 40, 101, 112, 191, 196–197, 200–201, 206 conceptual, 22–25, 200–207 Sterbehilfe, 50 stereotype, 65, 85, 146–148, 207

Strasbourg, 90, 132 structure Page 285 →general concept, 41, 60, 66, 72, 77, 100, 107, 115, 151, 197, 205, 207 institutional, 112, 156 subject, 5, 51, 64–67, 81–86, 114, 163 supranational, 3, 7, 13, 22–24, 31–36, 44, 53, 69–71, 91, 195 Switzerland, 5, 23–24, 28, 33, 97–99, 103, 123, 125, 132, 160, 183, 185, 191 Е iklovГЎ, JiЕ™ina, 143, 150 Е ЕҐastnГЅ, Boris, 33, 159, 184 text (analytical category), 66, 83, 84, 87 therapy, 30, 50, 52, 131, 136, 137, 213 Thiel, Marie-Jo, 129 Todd, Emmanuel, 95 Torfing, Jacob, 60 tradition, 5, 93, 94, 98, 108, 116, 151, 159, 183, 202, 207 Tramois, Laurence, 27, 103, 117–119, 121, 137 TЕ™eЕЎЕ€ГЎk, Petr,160 United Kingdom, 5 United States of America history of death and dying, 15–19 US Supreme Court, 1 versterven, 20, 210 Waldby, Catherine, 47 Welby, Piergiorgio, 25 WeiГџ Robert, 79 withdrawal, 49–50, 214 World Health Organization (WHO), 23 world politics, 8, 207 Yanow, Dvora, 11

Zelizer, Viviana, 9, 48, 56 ZГ©nit, 126, 127 ZlatuЕЎka, JiЕ™Г-,35, 159, 186