Governing through intimacy: Explaining care policies through ‘sharing a meaning’

Introduction

‘We want to help you to manage the care of dying people … let us speak about your fears and wishes.’ This statement introduces the online initiative ‘Dying.cz’ (www.umirani.cz, accessed 19 August 2009) of the Czech non-governmental organization Homecoming, which runs assessment services for the care of terminally ill people. ¹ Homecoming is a secular service in the Czech Republic that, as the only one of its kind in the nation, provides assistance to those who want to support their dying relative or friend at home or who need help navigating the system of care provided by the state. Family members and friends who organize care for the dying go online to consult about medical support (information about symptoms, incontinence products, or medications), administrative support (legal provisions and applications for state financial support), and psychosocial support. This last feature represents the core of the following investigation because it shows how emotional experience governs the production of end-of-life care concepts.

This article does not aim to evaluate the state of end-of-life care in the Czech Republic, much less pronounce judgement on the ethics of such care. The main argument is that the intimate way in which users of Homecoming share their feelings, anxieties, and wishes is not only the consequence of religious or ethical aspects of ‘dignity’ that care policies commonly imply (Riis and Woodhead, 2010; Skilbeck and Payne, 2005), nor is it just a result of the therapeutic function that psychosocial support might have in general (as suggest Hodge, 2005 or Stenner and Taylor, 2008). The article argues that, by privileging some meanings over others, intimacy plays a key role in the dynamics of governing of the policy field.

The word ‘intimate’ refers here both to the intimate state of body and mind in the context of dying and to the form in which this is ‘shared’ by involved actors. Intimacy implies that the collective has validated an individual’s emotional experience (see also Zelizer, 2005) and, in political terms, it articulates power relations among policy receivers and policy providers (described also by Barnes, 2008). Thus, this article explains the potential that intimacy has for governing by mediating between current psychosocial theorizing of emotions (Ducey, 2007; Stenner, Barnes and Taylor, 2008; Stenner and Taylor, 2008; Zelizer, 2005), the work of poststructuralist policy analysis (Glynos, 2008; Gottweis, 2002; Hajer, 2005; Norval, 2009; Stavrakakis, 2008), and the recent debate on the dynamics of governing in health care policies (Memmi, 2004; Nettleton, 2000; Novas and Rose, 2000) and in social policies (Hunter, 2003; Taylor, 2006).

After a brief explanation of the Czech context, the article develops the concept of ‘intimacy’. ‘Intimacy’ bares the passage from individual emotions to their validation by a specific ‘collective’, a passage that occurs through sharing of meanings within those collectives. The analysis examines the sharing of meanings in Homecoming’s agenda. The stories of mourners in the organization’s online forum show, on one hand, that both the ‘context’ of meanings and the ‘positioning’ of actors that articulate them predetermine the way actors share their emotional experience, by whom and where. On the other hand, Homecoming’s experts implement these stories within their concept of end-of-life care, and their agenda reveals the key role of shared meanings for the production of the imaginary of needs, feelings, and wishes when death is the inevitable outcome.

The article therefore suggests ‘governing through intimacy’ as a device that highlights the importance of emotional experience in the creation of respective end-of-life care concepts. Analytically speaking, this device enables us to see how meanings are collectively ‘shared’, that is, by whom they are understood in a specific way and how these meanings shape relations of actors towards each other. The article concludes by pointing to the importance of this view for the understanding of the psychosocial dimension in policy analysis.

Czech policy making on end-of-life care

The complexity of Czech policy making on care for the dying stems from the context of the transformation of health care after the 1989 Velvet Revolution. High turnover rates for health care ministers and associated personal reorganizations have encumbered the visualization, let alone the accomplishment of long-term goals in the field. Furthermore, according to a recent ministerial report on patient satisfaction with the care (Roundtable for the Future, 2009), almost 70 per cent of respondents are unhappy with the way medical staff communicates with them. Among the problems identified is the lack of protocol for who communicates with the patient and how (Methodical Guidelines of Ministry of Healthcare, 1998; Roundtable for the Future, 2009). The medical community functions incoherently when facing dying patients because of an unclear legal status of care for the dying that is seen only as a facet of emergency care (‘Social Services Law’, adopted by the Czech parliament in 2006). The patient’s support network is often excluded when the medical staff develops the patient’s care plan (Roundtable for the Future, 2009). All this hinders establishing a setting that takes into account the specific needs of the dying. What’s more, the awareness about what this type of care entails becomes opaque (interviews CZ2, CZ3 ² ).

In general, care policies are shaped by demographic changes, increased mobility, and the declining number of multigenerational homes that once functioned as care settings for the dying (as shown also by Clark, 2002, 2003 and Gronemeyer, 2005). In the debate on end-of-life care, demographic changes have in recent years played a greater role in the Czech Republic than, say, religious institutions, because atheists account for around 65 per cent of the population (Czech Statistical Office, 2012). Moreover, the Czech Republic has 27 hospices, only eight of which are affiliated with religious institutions, with the rest run by non-governmental networks such as Homecoming (Hospice Organization Czech Republic, n.d.). Although the total number of hospices is comparable to that in other European countries, the Czech system lacks alternatives ³ and, especially, lacks sufficient public awareness about the services the hospices provide (Doležalová, 2008; Kudelová, 2003; Sláma, 2001). Rather than being admitted to hospices, patients are often instead admitted to intensive-care units or to units for long-term patients (Statistical Data on Czech Health Care, 2009a, b). Such units offer a pertinent illustration of the encrypted conditions in the policy field: ‘The fact that those people do not belong in these units [they are not long-term ill], and that their quality of living – or dying – could be totally different’ (interview CZ4) brings care recipients into a comfortless situation and might be the reason that they sheer away to hospices or search for information on non-governmental networks.

Homecoming, the only network that can provide psychosocial services specific to dying, has developed into a national advocacy forum in the Czech debate on end-of-life care. Listening to stories of a dying father who – knowing that this is the last month of his life – calls his son to return from the United States or of a dying wife who spent her last day travelling from one hospital to another because ‘nobody really knows where to put her’ (interview CZ4) are among Homecoming’s daily tasks.

We feel like a one-eyed king in the land of the blind . . . when I receive calls from our clients, I hear all the time: ‘this is the first time someone talks so nicely to me. You are so kind. You must be an angel.’ It hurts me. It hurts me because I know that we are – excuse the expression – only parasites of a structure that does not function in order to satisfy the needs of the dying and their families. (interview CZ4)

Homecoming’s Dying.cz website doesn’t just facilitate communication with clients and their families; it has become a tool to share experiences beyond the client network:

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 CZ4)

Homecoming promotes legal changes in the policy field and, for that reason, it also organizes workshops for care staff and for social workers interested in building a mobile hospice in the region or developing an information site in their own community. Homecoming’s psychosocial support is intended to ‘fill the gap of knowledge . . . and share the experiences’ (interview CZ4). Homecoming validates the difficulties facing people experiencing end-of-life issues, and at the same time, it supplies data about what patients and their fellows ‘want’ and ‘feel’. It distributes information aimed at reducing fears, anxieties, or loss of hope (interviews CZ1, CZ3). The following theoretical discussion explains how this validation of emotional experience, as displayed both in the online forum and in Homecoming’s mission statement, is reflected in their concept of end-of-life care, and how this uncovers a governing potential of intimacy.

Between meaning and emotion: Intimacy as a device for care policies

The establishment of therapeutic self-help groups in which emotions can be articulated is not uncommon in care policies (Ducey, 2007; Hoggett, 2000; Kröger, 2009). Neither is investigating the role of the psychosocial dimension in the production of knowledge hardly new (as shown for example in Greene, 2002; Hodge, 2005; Taylor, 2006). Against that background, a study of Homecoming highlights the role that emotional experience (sharing last moments, preparing for death, mourning) takes in realizing respective policy concepts (as suggests also Barnes, 2008, for social welfare policies) and reveals, additionally, that the realization builds on a validation of that emotional experience that I frame as ‘intimacy’.

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 (as argue also Achterberg, 1989;Douglas, 1966; Sennett, 1976 or recently Zelizer, 2005). In that perspective, we can follow the validation by analysing modes in which meanings around dying are shared and, consequently, frame intimacy as a relation of emotions to meanings. Such notion of intimacy subscribes to the discursive nature of emotions (as stated by Ahmed, 2004; Gould, 2009; Nussbaum, 2001), but suggests, at the same time, that emotions open meanings towards their own transformation.

End-of-life care concepts reveal this interdependence of emotions and meanings. They 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 context of the imaginary of dying (as argue Brooks-Gordon et al., 2007; Kaufman and Morgan, 2005; Kübler-Ross, 2009). The values of dignity we attribute to different forms of dying account for the social conditions in which people die (Kearl, 1989; Noys, 2005). In short, the end of life is shaped by meanings (as shows Kaufman, 2005). However, because it is also highly emotional, the emotions surrounding the end of life have challenged, throughout the philosophical and ethical debate, the relevant issue of dignity. By spanning both public and private, as well as the individual and the collective, intimacy affects the nature of interaction in and towards intimate domains (as show Giddens, 1992;Roseneil and Budgeon, 2004; Zelizer, 2005) and reflects by that this engagement of emotions and meanings.

Three literatures have recently been addressing the interdependence between meaning and emotion: poststructuralist policy analysis, which emphasizes that policies hold different meanings for different groups of actors; the psychosocial theorizing of emotions that engages with the role of emotions in shaping identities of those groups and thereby affecting the dynamics of governing; and, finally, the current debates on governing in social and health care policies that investigate self-governing through meaning (see in particular Memmi, 2004; Novas and Rose, 2000). I bring these literatures together in the notion of ‘intimacy’ that enables us to explain the dynamics of governing of end-of-life care concepts.

Poststructuralist policy analysis insists that a ‘fact’ does not merely appear but is created by what it ‘means’ to specific groups. Supported by, among others, perspectivism (e.g., Fay, 2005) or situational approaches to knowledge (e.g., Haraway, 1988), and inspired by Michel Foucault’s work on discourse (especially Foucault, 1966), poststructuralist scholars have highlighted the interplay of meanings among actors (Gottweis, 2002; Griggs and Howarth, 2011). This agenda has made meaning also more explicitly a struggle of power (Howarth, 2010), and the analyses have stressed how meanings create particular groups of actors (Glynos, 2008; Hajer, 2005). Beyond poststructuralist thought, they have encouraged investigations of the link between meanings and actors in terms of a ‘dramaturgical’ analysis (Hajer, 2005), the ‘argumentative’ analysis (Fischer and Forester, 1993; Gottweis, 2002), or more dynamic concepts of ‘meaning’ (Wagenaar, 2011; Yanow, 1996).

However, the study of the emotional site of meaning – that is, the role of emotions during interactions of actors through which meanings become ‘understandable’ or ‘good’ – has been rather marginalized in those approaches. Although some research has been done on the subjectivity layers in meaning-making (see, e.g., Norval, 2009) or on the role of psychoanalysis (Stavrakakis, 2008) and of affects (Glynos, 2008) for production of discourses in policy processes, ‘discourse’ is predominantly seen as a collectively shared meaning.

The individual and his or her feelings are part of those collectives, but most studies do not pay specific analytic attention to the individual when investigating the interactions inside those collectives. Analysing the mode in which meanings are shared during those interactions uncovers how subjects engage with meanings and how they position themselves to values associated with particular policy issues. Sharing a meaning is therefore key to understanding how meanings develop and how they influence both the definition of a policy issue and the dealing with it.

Psychosocial theorizing of emotions responds to that challenge insofar as it attends to the importance of the psychosocial dimension when framing identities of policy receivers (Hoggett, 2000; Hunter, 2003) or when examining how knowledge is produced around policies (e.g., Greene, 2002; Stenner and Taylor, 2008; Taylor, 2006). These studies show that how actors feel about a policy issue shapes what they do and what they understand as relevant. The psychosocial dimension also affects the way actors carry out these policies (as show Barnes, 2008, for participation, and Hodge, 2005, for deliberation). Subsequently, the psychosocial dimension shapes values because emotions underpin the creation and the stratification of values within a policy issue.

In that respect, ‘intimacy’ not only enables the explicit linkage of the emotional experience to the collective interpretation transmitted through meanings, but, moreover, it gives a significant focus to emotions when speaking about the values of dignity upon which end-of-life care policies are built. In recent decades, end-of-life care has developed into a policy field in which the demand for dignity supports the idea of developing individualized care projects. Such policy projects advocate for intensifying individual participation, either in terms of financing (Memmi, 2004) or in terms of individuals assuming the organizational tasks of the institution (as proposes Homecoming), or by highlighting the role of the individual in shaping the dying process (as shows Nettleton, 2000, for health care policies). In a situation in which policy receivers are terminally ill, suffering, and outside the economically active population, dignity becomes the justifying device around which care settings are organized.

Dignity implies the engagement of the collective towards the individual and vice versa: in order to respect dignity, the care project must establish an intimate zone where the individual’s needs could be satisfied; in order to create this zone, the collective has to validate those needs. The validation corresponds with the mentioned trend of organizing those policies around governing techniques of the individual who engages with meanings existing around the issue (as argue also Novas and Rose, 2000). Since the validation concerns emotional experience, I stress ‘intimacy’, rather than dignity, as a device explaining care policies.

In the specific case of Homecoming, intimacy links meanings of dying to particular emotions of the users. I therefore show that intimacy affects the respective concept of the end-of-life care because it advocates for emotional experience, rather than some other experience, through the sharing of meanings. Meanings develop along interactions that generate emotions and, simultaneously, emotions are framed during these interactions by meanings. This dynamic of meaning and emotions invites us to consider the governing dimension of intimacy.

Material and methods

The analysis combines poststructuralist policy analysis and French discourse linguistics (Charaudeau, 2000, 2008; Maingueneau, 1999). This methodological combination explains the dynamics of governing by observing how meanings are shared among actors; it also reconsiders the role of structure-oriented approaches to analysis of policies by focusing on singular exchanges among actors, including the emotions they express.

The analysis views the data as a set of ‘contracts of communication’ (Charaudeau, 2000). The ‘contract of communication’ engages explicitly with conditions of the mutual validation of emotional experiences of actors of the contract (as Honneth, 1996, also postulates). The ‘context’ of the meaning and the ‘positioning’ of actors reveal how meanings are ‘shared’ during exchanges (as Charaudeau, 2008, and Maingueneau, 1999, also postulate). ‘Context’ refers to the social, historical, or cultural setting; ‘positioning’ reveals how actors stand in relation to that context, and it examines whether they pronounce their statements in an authoritative style or in a friendly style, whether they initiate a more intimate connection with the other, and the like. The analysis examines the interdependence of both elements, that is, how meanings are shared according to their contexts and how actors express their emotions by positioning themselves towards those contexts.

The analysis is based on a set of extensive sources. I conducted five interviews with actors of Homecoming between 2007 and 2008 and examined their policy documents, and in April 2008 performed a participatory observation of their training programme. I followed Homecoming’s online forum between 2006 and 2009 and analysed both the discussions and the goals reflected in the website’s stated objectives. As a validity check for my analysis, I identified meanings around dying through 23 interviews, including those with doctors at palliative care centres and with family members of terminally ill patients, and through analysis of the national press published from September 2006 through June 2009.

Governing end-of-life care through intimacy

‘You cannot imagine how emotionally people write in these forums!’ were the introductory words of the chief manager of Dying.cz during our interview. The positive effect of having the space to share emotions can be also seen in the feedback sections, where posters often report their stories and emphasize how the online support has guided them through the trying periods. ‘People receive a sort of listening ear that makes them feel more secure in their difficult situation’, the manager explains. Dying.cz supplies users with information about end-of-life care that is unavailable elsewhere due to incoherence in the medical sector:

In general, people do not know where they belong as dying fellows, where to look for help. They are sort of outside of the table charts and statistics, because dying care is a different type of care compared to intensive units or acute medicine. (interview CZ4)

In the framework Homecoming offers, emotions and meanings are linked through a validation that transgresses meanings expressed by users of the forum to the organization’s relevant concepts. First, families are given validation 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 guiding seminars (interview CZ6), and by relying on this body of material when ‘lobbying for a better institutional embedding of end-of-life care’ before funding institutions and the Ministry of Healthcare (interview CZ4). Homecoming’s experts distribute this knowledge farther afield in scientific papers and media articles (Sláma, 2001; Špinková, 2008; Svatošová, 2008).

On the Dying.cz website, people want to be heard; they want to be consoled and supported. They want advice on topics that in their daily lives they might otherwise classify as taboo. They write openly about their ‘evenings spent crying’, about their fear of ‘losing Mother’. They write about the intimacy that is implied in care for the dying: incontinence of the patient, providing assistance in clothing or washing that leads them to completely novel interactions with their family members, seeing the body or mind changing to an unfamiliar state they must now learn to cope with. This information can also be found in Homecoming’s information flyers (especially ‘Myths and Questions about Dying and Palliative Care’, ‘Last Whiles’ and ‘We Can Help Each Other’).

The website is structured into two dedicated forums: a Q&A with experts, and discussions among ‘dying peers’, that is, persons confronted in some way with dying. Both forums are further differentiated into various sections, such as information for experts in the field (especially nursing staff and doctors) as well as for patients and their families (found primarily in the expert Q&A forum), and a special section dedicated to mourners. Whereas in the expert Q&A forum the general consulting mode is mainly preserved (a question by a patient, nurse, doctor, or relative is followed by the expert’s answer), a relatively open mode of communication is maintained in the peer discussion forum, where questions are not always ‘answered’ but are more often ‘discussed’.

At the same time, Homecoming’s curriculum responds to intimate concerns on supportive care of the terminally ill by fighting against the vision of end-of-life care as ‘depersonalized’ practice (interview CZ3) and by arguing against ‘myths and lies about how end-of-life care causes only problems and pains’ (interview CZ1). Staffers and experts writing for the site advocate Homecoming’s visions, and the forums establish a space for articulating the difficult emotional states of the concerned people.

To accomplish this, Homecoming first identifies peer forums as a milestone of its care agenda (interviews CZ1 and CZ4). Peer conversation is presumed to be advantageous when it focuses on the psychosocial support of the patient. Homecoming’s care 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 acknowledgement of the client’s emotional needs are necessities in the organization’s negotiation of the care of the client, and they are skills that all staffers must master: ‘We enter their homes, but we are only visitors there. We must respect their rules; we are not there to change their patterns of behaviour but to accompany patients and their fellows on their journey’ (interview CZ5).

Second, all Homecoming actors that I interviewed included in their responses about ‘good dying’ a statement along the lines that ‘people should simply die at home’; such a statement reflects the actual name of the organization, as it refers not to a physical place but to the abstract ‘home’. Guided by the metaphor of ‘home’ and the meaning of what ‘good end-of-life care’ should be they convey this meaning in manifold ways. ‘Home’ encompasses emotional needs and imaginations rather than a concrete space. Homecoming uses individual stories to emphasize this emotional context of home. This ranges from acknowledgements from posters to the 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 (such as the financial support during the period of care, washing or wound cleaning, side effects of pain medications, and other concerns arising during the mourning process).

Intimacy is identified on three levels of Homecoming’s curriculum: on the level of approaching the knowledge; on the level of sharing that knowledge; and on the level of embedding that knowledge in respective concepts of end-of-life care. The first two levels show the strategic role of the ‘context’ of a meaning that enhances the access to knowledge and the additional information that the perspective of actors through their ‘positioning’ gives us. The third level shows that intimacy transgresses meanings and reflects its dynamics of governing within a policy field.

The following analysis explains how the emotional experience with dying and end-of-life care develops in a collective and how this invites us to think about the role of intimacy in such a development. Through (a) its approach to the intimate context of the information around dying and (b) the emotional awareness during the communication in the forum, Homecoming (c) transgresses meanings on dying that become key features of the care service they offer. We can explain that intimacy as a validation of emotional experience is central to this transgression.

I observe this transgression through the shared emotional experiences posted on the website Dying.cz. The analysis shows that the interdependence between the context of meanings and the positioning of the actors generates specific understandings of dying. Positioning can resituate meanings around new contexts (new trends, lifestyle choices). Context can initiate new positioning of actors, for example by assigning them new responsibilities. Intimacy is defined as a deep personal knowledge, which is discussed (context), but it is also defined by the way it is shared among posters (their positioning). The Dying.cz forum can be regarded as a collective in which individual meanings are validated (or not), and it examines, therefore, in what ‘context’ actors share the meaning and how this relates to their ‘positioning’ towards one another during that sharing.

(a) Approaching the intimate context

Approaching the intimate context relies on integrating ‘home’ with the care alternatives discussed in the online forum. The demand for ‘home’ is, furthermore, analogous with the demand for ‘intimacy’, because ‘home’ represents a space where emotions can be articulated and where they will be acknowledged. The organization’s brochures ‘Mobile Hospice’ and ‘We Can Help Each Other’ highlight the advantages of an end-of-life care that assesses clients in their homes and that is tailored to each patient’s network of family members and friends. Homecoming’s policy documents advocate for developing such formats of care, as these not only are less expensive than the usual hospital settings but also are more adaptable to the needs of the dying (Škrdlant, 2007; Špinková, 2008).

Moreover, clients can approach the intimate context of dying in ‘Mourning Thursday Evenings’, a bereavement programme run at Homecoming’s centre in Prague, in which they can share their own experiences (interviews CZ1 and CZ4). The acknowledgement of emotional needs has an impact on the communication of patients and their families with the medical community, and each of these three groups invariably first acknowledges emotional needs as a way to approach an intimate context with the other. This emphasizes also the ‘How to Assess Care at Home’ forum section.

In that respect, posters complain about the difficulty of emplacement of emotions in the public setting (see Dying.cz ‘Experiences with Dying’ section). Systemic changes are often demanded by all these people: the institution as such (hospitals or palliative care centres) is blamed for not doing everything ‘on the emotional level’. In this section, lack of ‘appropriate communication’ and lack of ‘human proximity’ are the main concerns of people posting to the forum. Empathetic communication constitutes the essential characteristic of an appropriate place in which to die. This gives an emotional account to the decision about how to organize the end-of-life care of our loved ones.

Demand for intimacy emerges thus from validation of the emotional context by others as it shows, for instance, in the following description of a hospice: ‘I arrived at the hospice. The first smile of the nurse and her warm handshake tell me that this is the right place for my father’ (emphasis added). Similar demand for intimacy can be seen in the ‘Dying and Grief’ forum thread, where peers discuss the needs of patients and mourners, console one another, and exchange contact information. For example, a story of two young women, ‘Romcˇa’ and ‘Kamcˇa’ (pseudonyms), who share their experiences of losing their parents at the age of 13, shows the importance of validation of feelings within the interaction. ‘Do you feel the same?’ 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 inconsequential here; their story gave rise to responses that demonstrate concern and empathy. In the following, I show how concern and empathy are heightened by specific ‘positioning’ of the involved posters and, then, how such a format is complementary to the concept of the care that Homecoming advocates.

(b) The ‘positioning’ of actors during sharing

Homecoming encourages emotional externalizations by advocating a positioning among users and experts that alternates a paternalistic mode of communication with a peer-to-peer mode. Both forums – though the expert forum tends to use a paternalistic communication mode and the peer forum tends to use an informal communication mode – contain examples of both types of positioning. The duality is important here, because it creates context-sensitive spaces for the articulation of emotions. It supplies intimacy with what amounts to a continuity of respect in both settings. It also shows the transgression of meanings.

Triggered by the invitation ‘let us speak’, the communication starts as a paternalistic one, that is, one consistent with the more formal expert-to-lay communication. Users are invited to consult the available information and to post their questions. Nevertheless, the forum often switches to a mode in which emotions just free-float peer to peer. This plays a crucial role because this communication mode is the opposite of the commonplace institutional practice of limiting communication to an expert-to-lay mode. Forum posters may begin by looking for information and wanting to share their emotions, but they often get into exchanges deeper than the Q&A with experts.

The free airing of personal stories and of unsolvable questions in the forums offers the impression of a self-governing network in which the externalization of emotions is not only allowed but also even recommended (‘Cry, cry, cry – that is my advice for these difficult days!’). Another mourner expresses the role of communicating the difficult state of emotions when he or she faces the death of a loved one: ‘Words are helpful at times, when the need to learn is greater than the fear of its name itself’.

Switching between the paternalistic and the peer-oriented modes offers a setting in which the meaning of dying develops into a field where emotions can be shared. For instance, the use of the first-person pronoun ‘I’ instead of the second-person ‘you’ adds a performative dimension. The second person is commonly used when giving advice, orders, and restrictions (as it maps Maingueneau, 1999). The use of the first-person pronoun embodies the individual’s subjectivity and increases an empathetic mode of communication (in the sense of the common phrase ‘if I were you, I would …’). The introductory phrase in the expert forum illustrates this very well: ‘How can I say death is on its way?’ (emphasis added). From the very start, it includes the reader in the core of the statement; it positions her or him inside the communication.

Using the same logic of inclusion, the plural first person appears 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 use of the first-person plural extends to include the person being responded to. Moreover, it is accentuated by its opposition to ‘no one’: ‘no one should be left alone … we can help you to manage the dying’ (emphasis added). As the use of the plural pronoun ‘we’ includes ‘everybody’ in this feeling, it makes it a ‘shared meaning’: ‘It is normal when we feel alone’ (meaning that anyone can feel alone); ‘It is normal when we cry’ (meaning that everyone cries). The same ‘we’ can simultaneously suggest the character of a self-help group.

Through the use of the pronouns ‘I’ and ‘we’, Homecoming focuses on inclusion and positions itself as a part of the forum community. Even where the singular first-person pronoun ‘I’ is employed, it is used as a link to the communication partner and builds again a ‘we’ category. The use of ‘we’ builds a community that shares common (emotional) knowledge about dying: users post events, pass along information about recent publications, and comment on Homecoming’s action points.

The forum generates specific meaning of the situation in which people arrive when facing dying by using specific forms of pronouns that express the positioning of actors. The Homecoming website uses this sharing mode of the community by acting in the name of the collective (‘we want to introduce structural, social, and legislative changes’, emphasis added), and by supporting the community feeling (‘I can imagine how someone like you feels’, emphasis added). Homecoming acts on behalf of ‘people lost in their situation’ (interview CZ3, as well as in the introductory text on the website). This declaration of potency, combined with concerns about clients’ feelings, is consistent with the intimacy in the organization’s communications. This positioning gives important input on how users participate in the development of meaning both through peer-to-peer communication and through expert-to-lay communication.

The expert forum is divided into sections by professional field (social worker, psychotherapist, lawyer, doctor, other), so posters can ask experts about specific legal or material aspects of dying. The experts do not answer just the technical part of the questions; they also discuss the emotions and needs of patients and mourners. The peer forum concerns more the acknowledgement of one’s own feelings (‘is it normal to be like this?’). Posters to the peer forum console one another and exchange contact information if they wish to continue the discussion offline. However, where an entirely new matter arises, paternalistic communication prevails. This happens either through the use of more formal grammatical constructions, such as ‘you should’ and ‘you cannot’, or by quoting well-known writers and thinkers.

We thus observe how both the emotional context and the positioning of actors smooth the progress of meaning of end-of-life care within a public context. ‘Home’ as a spatial category seems not to function any more, since an increased number of dying patients have been brought into public health care centres and since families move around much more than they did in the past, resulting in fewer multigenerational homes (Nesstar Catalogue, 2009). From that perspective, the hierarchy-free positioning and the inclusive use of pronouns recall the intimacy of home and emplace the meaning of dying within new contexts and around new actors. Next, we look at how such a sharing of a meaning transgresses it into Homecoming’s care concept and, in conclusion, how this reveals that intimacy governs this policy field.

(c) Transgressing meanings

Using the forum, Homecoming establishes a network that helps people organize care for their loved ones within the context of new family situations and lifestyle choices. Its activities also 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 compare, in this last section, the analysis of the 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. I therefore stress the coexistence of the context and the possibility of changing it through the way meanings are shared. How does ‘context’ serve as an argument for a specific concept of end-of-life care, and how does the ‘positioning’ of actors develop the meaning in the discussion of this concept?

First, at the level of the web forum, Homecoming links the intimate topic of dying with the anonymity and ubiquity of the internet. The web forum constitutes a public but nonetheless anonymous place where emotion can be shared. Intimacy is steered through the anonymity of users and posters, as well as through the type of communication described earlier. This paradox of intimacy in public is found in the inner structure of the web, as well. The web connects patients together intimately but allows lay posters and experts to breach the barriers of traditional communication and to use the intimate mode to create a trusting relationship between them.

This happens, for instance, when someone praises in a distinctly individual way a hospice centre at the ‘Mourner Forum’, which then can be found in the ‘Contacts for Hospice Centres’ section; or when a respondent praises in the peer ‘Experiences with Dying’ section knowledge they obtained from the expert forum. The ever-present option of switching between acting as an expert and reacting as a peer underlines the contextual journey from being intimate to being trusting and empathetic. (See also in Homecoming’s flyers: ‘Can We Give You Advice?’ and ‘Last Whiles’.)

Second, such data provide a follow-up strategy about what to put in the section for health care providers and what needs to be developed (interview CZ4). Homecoming uses these data when presenting them as evidence of how dying ‘causes pain’ and how the traditional medical establishment fails to acknowledge its emotional component (interview CZ3). The acknowledgement of the emotional component is also highlighted in the information flyers of Homecoming (‘Myths and Questions about Dying and Palliative Care’, ‘Without Pain?’, or ‘About Pain’). In a more general way, this type of interaction is more likely than traditional modes to encourage the individual, while discussing his or her intimate sphere, to reveal where the key problems lie.

Third, Homecoming highlights the establishment of such an empathetic relation by its education and training curricula for the staff: ‘We are only visitors to these clients’ (interview CZ6). Only after hearing about clients’ anxieties and wishes and after consulting with caregivers about their ability to participate in the patients’ care do staff members negotiate individualized care formats with clients. Homecoming ensures their potential clients know about such a procedure (see the flyers ‘Can We Give You Advice?’, ‘Last Whiles’, and ‘We Can Help Each Other’).

‘Governing through intimacy’ consists of the ability of situational transgressions between contexts and of the capacity to conform the positioning of actors to it. Homecoming directs a concept of dying that can be dealt with intimately through bottom-up knowledge and the switch of positioning of actors (experts-to-peers and vice versa, and peers-to-peers). With the help of intimacy, the organization governs the policy field by constructing the necessity to act and by showing the need for validation of the policy provider’s emotions.

Conclusion

I have observed ‘intimacy’ as a validation of emotional experience related to dying. I have therefore examined both the context and the positioning in which this emotional experience is shared in order to demonstrate the process of such validation. The analysis illustrated that intimacy brings people into a contract of communication in which they understand meanings in a specific way. At the same time, I have identified intimacy as a key feature to Homecoming’s end-of-life care concept: in the way the organization deals with clients at home and during the bereavement programmes; in the training of the staff who learn to respect the ‘home’; and, finally yet importantly, in the way Homecoming forms a community that is ‘aware of what dying is about’ (www.umirani.cz, accessed 19 August 2009).

Looking at intimacy as a tool of governance – rather than a tool of therapy or an aspect of dignity – adds a new dimension to the literature on end-of-life care policies. It highlights the role of emotional experience for the knowledge production inside of a policy by showing that meanings can change along the way they are shared among actors. This shifts the literature’s focus from meaning structures and collective identities towards individuals and their feelings as dynamic elements of knowledge production. Moreover, highlighting the governing nature of intimacy proposes an analytical framework to investigate power relations among actors during meaning’s sharing.

Although some research has been done in poststructuralist policy analysis, the psychosocial theorizing of emotions, and current debates on governing in social and health care, there is a need for a concise analytic agenda dealing with the interdependence of the individual and the collective stretched along the duality of the intimate and the public by which this policy field is shaped. By emphasizing the part an individual and his/her feelings play when policies get formulated or implemented, this agenda would contribute to further development of policy analysis.