From growth to silence: expressive endeavours at the end of life

From growth to silence: expressive endeavours at the end of life Gaudenz Urs Metzger Department Design, Trends & Identity, Zurich University of the Arts, Zurich, Switzerland ABSTRACT This ethnographic study explores how severely ill and dying persons participating in expressive forms of culture, such as art, blogging and talking, confront dying and death. Influenced by the increasing relevance of values such as expressivity and creativity and the mediatisation of everyday life, more and more people facing death in globalised Western culture seek their own expressive ways to deal with finitude in online and offline contexts. Framed by Tony Walter’s sociology of death, which captures key features of death attitudes within Western societies, this study identifies commonalities in the different expressive endeavours at the end of life. The data for the analysis stem from encounters with 12 persons receiving palliative care in Switzerland. The study found that the performances of individualistic expressivity are informed by the idea of personal growth, prosumer and sharing culture, a quest for belonging and the wish for silence. The findings aim to contribute to further the understanding of current forms of mediated dying in networked society. KEYWORDS Art and expression; blogging; digital coping; digital prosumerism; individualism; palliative care; Walter’s ideal types of death Introduction I have to say goodbye to everything, my whole life comes to an end. Right? That’s why I talk about my life and my work with you, as well as the pastor and the psychologist. I feel the urge to once more talk about my life, my experiences, my education, encounters with other people and so on. [. . .]. When I look back at this week, here in the palliative care ward, I realise that I’ve really had the urge to talk. Also, to you. This quote is from Remo, a deacon and one of the 12 persons I met during my ethnographic research 2020–2021 in palliative care units, hospices and personal surroundings. 1 The emotional intensity of his words has left a mark on me and is retrospectively characteristic of the overall mood of my conversations and encounters with severely ill and dying people. This urge to talk about life in the face of death, to express emotions, and to keep oneself, the presence and the past alive through the exchange of thoughts and imagery is a common feature of the cases I was able to study. Nurtured by the therapeutic culture of palliative care, which promotes open awareness and acceptance of death (Hart et al., 1998; Saake et al., 2019), and stimulated by the mediatisation of everyday CONTACT Gaudenz Urs Metzger [email protected] Department Design, Trends & Identity, Zurich University of the Arts, Pfingstweidstrasse 96, Zurich 8005, Switzerland MORTALITY 2024, VOL. 29, NO. 4, 658–674 https://doi.org/10.1080/13576275.2023.2206011 © 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent. life, the participants used a variety of media and practices to process the experience of dying. As in other recent studies of persons living with terminal illness (Butters, 2021; Irving, 2017), I observed that alongside the expressive capacity of words, art and photography were important forms of communication to convey experiences and make meaningful connections in the difficult situation. In this article, I use the term ‘expressive endeavours’ to capture my interlocuters’ participation in expressive forms of culture at the end of life. The aim of this study is to explore these endeavours and to identify commonalities in them. Different forms of verbal and artistic representation of the experience of illness emerged in the conversations and encounters and I decided in the course of the analytical process of the research to subsume them under the aforementioned term. The term covers a number of things such as artistic projects pursued in the hospital and writing about illness on blogging sites on the web as well as therapeutic conversation with professionals and peers. The term is deliberately defined broadly in order to capture different qualities and aspects of ‘being expressive’ at the end of life, using the expressive capacity of spoken words and visual art as well as the communicative potentials of the Internet. While the anthropology of dying (Kellehear, 2015; Lawton, 2000; Menzfeld, 2018) and phenomena such as blogging of terminally ill patients (Andersson, 2019; Caduff, 2022; Lagerkvist & Andersson, 2017; Recuber, 2017) have gained growing attention, few studies have investigated how dying persons use a variety of means to confront their illness and mortality. Maija Butters (2021) highlights the importance of photos, artwork and blogs to explore how patients perceive their illness. Additionally, Andrew Irving (2017) reminds us that art, in particular, can provide an important resource to express emotional intensity in dying when pain or phases of illness ‘undermine language and produce an unbridgeable gap between signified and signifier’ (p. 122). 2 The ethnographic record I present in this article is based on encounters and conversations with seven women and five men receiving palliative care in Switzerland. They suffered predominantly from cancer and experienced long dying trajectories up to several years. Dying is a social, psychological and biological process (Glaser & Strauss, 1974) which may not be limited to a few days or hours before death, but can begin when, for example, a terminal illness is diagnosed (Kellehear, 2017). Some of the participants died just a couple of days after I met them, other are still alive. Their ages ranged from forty-eight to one-hundred-and-one years old. They engaged in different lifestyle behaviours and had both religious and secular identities, yet they all belonged to the white middle classes, were well educated and seemed to share the desire to communicate their experiences of illness. To frame their narratives, practices and negotiations of illness broadly, I introduce Tony Walter’s (1994) sociology of death as an analytical tool in this article. In his book The Revival of Death, Walter sketches three ideal types of death: ‘traditional death’, ‘modern death’ and ‘neo-modern death’ (p. 48) (Figure 1). The different dimensions of the three types can be considered as a ‘compass’ which provides information about the responses to death that western societies have been prone to over time. Walter’s ideal types illustrate, for example, that modern death fosters emotional privacy whereas neo-modern death, as cultivated by hospice and palliative care, values conversation and encourages the expression of experiences and emotions. Further, the ideal types capture the social context and structure which frame death attitudes. Generally speaking, traditional death is connected to community belonging, whereas neo-modern death, in contrast, is built on personal identity and MORTALITY 659 Figure 1. Ideal types of death. In: Walter, T. (1994). The revival of death, p. 48. 660 G. U. METZGER relationships. However, ideal types and empirical reality are not congruent. Ideal types should be used as a guide to understand ‘the exact composition of the colours that actually exist’ (Walter, 1994, p. 49). This study sheds empirical light on Walter’s ideal types drawing on my encounters and conversations with persons facing severe illness thus refining the concept of neo-modern death based on the findings. The ‘expressive revolution’ Dying and death as cultural phenomena have always been subject to social and religious changes that influence practices to deal with illness, finitude and transcendence. In recent centuries, individualism altered human attempts to cope with existential issues in the West. Generally speaking, with the beginning of the Renaissance period and the rise of humanistic values death became more and more an individual affair and concern (Ariès, 1976, 2008). This development intensified through incipient modernisation in which the importance of overarching moral and religious systems declined due to social differentiation, thus permitting individuals to cope with dying and death according to their lifestyle and needs. However, as Allan Kellehear (2007) argues, the individual freedom and ‘the pressure to “make sense” of the world’ (p. 137) are not confined to modern populations but ‘have been those of all urban – indeed “urbane” – populations since the birth of cities and the middle classes serving them’ (ibid.). Yet a rather new development that is appearing in the approach to death in these populations from 1960 onwards is that of ‘expressive individualism’. Expressive individualism ‘holds that each person has a unique core of feeling and intuition that should unfold or be expressed if individuality is to be realised’ (Bellah et al., 1996, p. 340). In the course of this development, numerous therapies and practices developed which ‘promise to help you find yourself, realise yourself, release your true self, and so on’ (Taylor, 2007, p. 475). This culture is also reflected in hospice philosophy which emerged in the 1960s and 70s and provided an approach to terminal care adapted to the requirements of individualised and secularised Protestant culture (Clark, 1998; Metzger, 2023a; Nash, 2013). In the context of hospice and palliative care, self-understanding, self-transcendence and self-discovery through means such as conversation and art are promoted to find existential comfort at the end of life (Saunders, 2003). As Walter (1994) highlights, in ‘neo-modern death’, the journey of dying becomes a ‘journey of the self’ (p. 58). In this journey, which today takes place in different social contexts (at home, in hospitals, on the Internet etc.) and is mediated by aesthetics as well as by rituals and medicine (Butters, 2021), tasks such as ‘finishing business’ or spiritual development can be accomplished, depending on the needs and lifestyle of the patient. More recently, the ‘expressive revolution’, which took place mainly among middle class people and affected the way this group copes with dying and death (Walter, 1994), has also become manifest on the Internet. The widespread public display of a patient’s intimate life in social media and blogs can be seen as a clear indicator of this global trend (see e.g. Andersson, 2019; Caduff, 2022; Metzger, 2023b; Recuber, 2017). According to Yvonne Andersson (2019), the public revealing of intimacies on the Internet counteracts modernity’s sequestration of death and draws attention to ‘existential givens and insecurities, such as illness and death’ (p. 15). ‘Digital affect cultures’ (Döveling et al., 2018, p. 1), which foster emotional exchange and give rise to feelings of belonging, have MORTALITY 661 become important social spaces for coping with adversity and hardship. Experiences and emotions attached to illness and existential issues emerging in these spaces ‘can be seen as the outcome of particular relational configurations, or “relational scenarios’” (2018, p. 2). Furthermore, dying and death have been given public visibility in recent years through art and artistic practices (Macho, 2007). Terminally ill artists display their experience of illness and suffering in videos, diaries and autobiographies. Corina Caduff (2022) argues that these pieces express ‘the wish for self-determination’, ‘the strive for recognition’, ‘the urge to communicate’ and the aim to ‘create a legacy’ or ‘break the taboo of death’ (p. 7, own translation). Overall, the appreciation of artistic lifestyles and creativity in (late) modern Western societies (Reckwitz, 2017) combined with the mediatisation of everyday life and the individualistic philosophy of hospice and palliative care (see e.g. Metzger, 2023b; Randall & Downie, 2006; Thoresen, 2003) contribute to an expressive culture of dying and death which values expression of and talk about feelings. As we will see, my interlocuters participate in this culture in various way, sharing forms of behaviour and values alongside their individual ways to come to terms with finitude and non-being. Methods and data (Digital) ethnography I chose an open and process-oriented ethnographic approach, which also accounts for the digital and acknowledges ‘the ways in which media are inseparable from the other activities, technologies, materialities and feelings through which they are used, experienced and operate’ (Pink et al., 2016, p. 9), to explore people’s experiences of illness and their responses to death. My interest in media developed many years ago while I was training as a photographer in art school before I leaped on an academic path. As I had no previous personal and professional experience with persons facing serious illness and death, I did not have a particular research question in mind when I started field research and to collect data. My primary aim was to be sensitive to the realities and situations of the persons, discovering interesting themes in the iterative process between data collection and analysis. The open and process-oriented approach should also allow for adapting to the difficult living conditions of the participants and actively involve them in the research process according to their needs and health condition. Ethnographic research is not based on a distanced observational stance but is an inevitably collaborative activity (Pink et al., 2016). From March 2020 to September 2021, I made several short field visits to palliative care stations, hospices and the participants’ personal surroundings. The participants were recruited from four different institutions (three urban hospitals and a hospice in a rural area in the Swiss mountains) and a palliative care outpatient service. Due to their poor health and need for privacy and retreat, it was difficult to follow them closely over a longer period of time. Further, my research was complicated by the COVID-19 crisis. In times of lockdowns, field access was hindered and I had to communicate with some participants via video conferencing, email or WhatsApp. The study is comprised of several ‘short-term ethnographies’ in which the ethnographer clearly indicates his intentions and engages participants in his/her project (Pink & Morgan, 2013). Pink and Morgan argue that short-term ethnographies are by no means ‘quick and dirty’ or less valuable than long662 G. U. METZGER term engagement, but ‘go beyond observation’ (p. 353) to create encounters which benefit from the production of forms of intensity and empathy. After potential participants were recommended to me by doctors or nurses, I asked the persons personally to engage in my project. I told them at our first encounter that I take an interest in their person, situation and the way they deal with existential issues. In addition, I indicated that they might want to share with me what concerns and moves them the most at this difficult moment in life. Starting with these informal conversations, I deepened my understanding of their experiences and perspectives with in-depth interviews, photo-elicitation (Lapenta, 2011) and internet-ethnography. Data collection In this article, I draw on different types of data: 1) eight in-depth interviews with a maximum length of two hours, which were recorded on a digital audio recorder and subsequently transcribed. Quotations in this article were translated from Swiss German to English and therefore do not reflect all original nuances and subtleties; 2) one photoelicitation interview which was conducted and recorded on the video conferencing platform Zoom and subsequently transcribed; 3) Facebook postings, containing photographs, video and text messages of one of the participants; 4) field notes of participant observation and informal chats; 5) e-mail conversations with enquiries on topics raised in the interviews. Data analysis I used an open coding approach to analyse the data. For ethnographic studies, working from the ‘ground up’ is an beneficial strategy, which has been, for example, demonstrated in grounded theory research (Glaser & Strauss, 1967). Overall, my analytical path was framed by Walter’s (1994) ideal types of death. After conducting a preliminary analysis, which identified different performances of expressivity in the sample, I assigned codes to the data, each code representing a concept of potential interest. The insights I gained allowed me to illuminate the key aim of this study, i.e. to identify commonalities in the participants’ expressive endeavours at the end of life. The analysis is organised according to three themes which synthetise these common traits: 1) mundane and spiritual forms of growth and transcendence; 2) self-empowerment and the spirit of sharing; 3) voices of silence. Analysis Mundane and spiritual forms of growth and transcendence Ongoing project realisation, exercise and conversation to attain happiness, immortality, purity or perfection was a salient theme in the observed cases. The participants’ strive for growth had both an extrinsic and intrinsic orientation and was driven by secular values in one case and religiously motivated in the other. The analysis revealed that they put effort into personal goals, projects and dreams between chemotherapies by actualising inner potentials such as creativity and imagination as well as relying on media and mediaMORTALITY 663 related practices. The ethos of growth which the cases share, however, was directed towards different goals and combined with artistic intentions as well as spiritual ideas. Karl, a sixty-three-year-old scientist, atheist and enthusiastic amateur filmmaker whose narrative focused mainly on personal achievements, expressed that his last unfulfilled dream was a circumnavigation of the world which he would have captured cinematically in a type of ‘emotional life documentary’. He said that the aim was to make this circumnavigation with a so-called ‘shrimp trawler’ and to shoot footage of nature and the ocean. In doing so, he wanted to continue his cinematic work, ‘so what I have now produced as a pure nature film, would have been the idea, on an emotional basis, but with the format of a circumnavigation of the world on such a trawler’. When I asked him about sources of meaning in the difficult situations, he said ‘Well, I’m living out my last dream digitally’. As he could no longer keep pace with his progressive ambitions due to the fatal illness, he pursued his film project with the help of the Internet and imagination. He stated that he spends hours in front of the computer, searching for boats, assessing gearboxes and engines, thus planning his trip and artistic project. By attending to his dream, he was able to create a fictional reality that enabled well-being and temporal healing from pain and suffering: And now I have rediscovered this dream and do nothing else day and night, thanks to the dear Internet and YouTube [. . .]. And I dream about how beautiful it would be to still be able to experience this dream. With the knowledge that it won’t work out anymore; but it gives me incredible pleasure. (Interview: 12 March 2020) In other cases of the study, the pursuit of artistic projects while dying served the purpose of creating a legacy which would outlive the mortal self. The focus on the possibility of post-physical existence and the imagination of a transcendental future, facilitated by media and material supports, in late modern consumer society has previously been observed (Lee, 2015). Emma, a sixty-eight-year-old photographer, tried to release a photo book while being treated in the palliative care station. It was a great concern of hers that this be done before she dies. Her existence, preand post-mortem, was inextricably bound up with her artistic work: ‘I hope I can release this book (. . .). Then I already exist twice’ (Interview: 18 November 2020). Art should make her person visible in public before and after death. Her desire was to attain secular immortality through outstanding achievements: ‘I’m trying my best to save from my archive whatever can be saved (. . .) according to the idea “you should have an eternal life and not be forgotten”. I know this is somehow foolish but a human desire’. This desire made her act eagerly in the hospital, driven by the hope that her mortal body will be superseded by great pieces of art. A similar mood of diligence marked other narratives which focused on spiritual development. The endeavour to transform oneself into a transcendent state might be accomplished through art or through a spiritual exercise. Michael, a seventy-eight-year-old teacher, reported ‘I’m trying to sort things out from the last years and (. . .) round off and throw away’ (Interview: 27 April 2021). He explained that ‘round off’ means ‘dissolving and connecting in the sense of via purgativa’, the first step in the threefold path of spiritual development for the union with God, which consists in purification through self-examination (McLaren, 2008). This concern to attain a state of purity, perfection or immortality originates in ancient philosophy and is taken up by Christian asceticism 664 G. U. METZGER (Foucault, 1988). In the cultural environments of (late) modern culture, personal catharsis is usually practiced in a small group of spiritual friends who gather to review negative influences on their lives (McLaren, 2008). This was also the case with Michael who used the opportunities between operations, therapies and phases of recreation, created by biomedicine’s prolongation of today’s dying trajectories (Kellehear, 2017), for spiritual growth. He testified that, having reached the end of his life, he wanted to complete the work of purification and perfection in communicative exchange with others: ‘I have gained a lot of experiences in it, in particular in talking to people (. . .) this is something I’m trying to focus on, to round off’. While Emma wanted to achieve secular immortality by transforming life into art, the goal of Michael’s ongoing exercise of self-examination through talk was to attain a state of purity. Both practices, however, can be interpreted as forms of transcendence which promote healing in dying. The practices seek to transform the human way of being, which is defective and subject to time, decay and death, drawing on the expressive capacities of art and words and a strong work ethic. In the case of Karl, ongoing artistic project realisation in dying, which enabled temporal healing from suffering, did not, in contrast, involve a reference to a transcendental future. The spirit of growth, however, which the three cases shared, can also have negative effects on the felt experience of dying. An observed consequence of this spirit was not only a certain unease among the participants, caused by their ambitions, but also a sense of despair and helplessness when illness forced them to give up on the task of selfdevelopment. This was particularly evident in Karl’s narrative. For him, visions such as the abovementioned circumnavigation of the world were the ‘goal’ and ‘joy’ of life, yet with the cancer diagnosis, as he recounted, ‘that has crumbled to zero’. In view of the lack of time and his physical limitations, a sense of despair arose. He compared the experience with a ‘trapdoor’ and emphasised that it is ‘the feeling, one can’t convey’. Movement and growth, which characterised his individualistic ethos, became overshadowed by the experience of motionlessness, caused by chemotherapies: ‘I’m awake for an hour and sleep for an hour. That’s what it looks like after the chemo. [. . .]. I lie motionless in the corner’. As previous studies have suggested, in view of the lack of time, persons with an individualistic value orientation one day might realise that their self-project ultimately remains incomplete and ‘their fragile attempts at personal meaning left shattered by the brute fact of death’ (Mellor & Shilling, 1993, p. 427). An option for those who consider the self the main source of authority out of this dilemma is to transform it into a transcendent state: death is only resisted by those who make themselves immortal through outstanding achievements or who complete the spiritual path. Unending work in the end of life journey can be seen as an offspring of the cultural climate of highly individualistic Western societies. Self-empowerment and the spirit of sharing Besides self-actualisation and personal growth, the participants’ narratives and practices were informed by the desire to give (public) expression to feelings and emotions. Contrary to nineteenth-century Romanticism, in which suffering and grief were dealt with in private (Walter, 1994), the cases highlight how emotional expressivity in dying has become a (semi) public affair, fostered by the communicative potential of art and the Internet as well as the therapeutic culture of hospice and palliative care. The analysis revealed that my MORTALITY 665 interlocutors’ individual participation in expressive forms of culture at the end of life were informed by self-empowerment strategies, sharing practices and a strive for meaningful connections and community belonging. Sarah, for example, a forty-eight-year-old blogger, used her writing skills to reflect on her personal illness trajectory and to break taboos: There are posts which express a zest for life. Sure, there also thoughtful moments, when I don’t feel well, when I sit at home, when I feel lonely, when I cry, [. . .]. This is also a part of it. [. . .]. It’s important for me to show every aspect of this illness, also to break the taboo of death. (Interview: 30 April 2021) Contrary to the assumption that death was silenced in modernity, I think Armstrong (1987) has justifiably argued that since the mid-nineteenth century there has been more discussion on death than ever before. Instead of what has been called ‘death denial’ – a contested thesis that first arose in the literature between in the period between 1955 and 1985 (Zimmermann & Rodin, 2004) – researchers now speak of death’s ‘talkativeness’ (Nassehi & Saake, 2005). 3 However, depending on the social context, talking about death can still be considered a taboo and Sarah’s comment indicates that her work aims to fully disclose the experience of illness without feeling ashamed. Since the ‘emotional field’ (Illouz, 2007, pp. 157–158) of death on the Internet is not controlled by professionals such as psychologists or pastors, which in modernity traditionally governed people’s intimate life (Foucault, 1976/1978), those who are directly affected can position themselves as experts in this field and define how illness and death are displayed in public. Sarah, in contrast to other cancer bloggers, who often use a militaristic language of fight, good and evil (Andersson, 2019), takes a reflected approach in this regard. For her, it goes against the grain to accept the media’s pornography of cancer death, which normally only pinpoints dead and survivors, winners and loosers: ‘There exist only two poles: the ones who are dead and the ones who survived. There is nothing in between’. Such ethical imperatives and norms are reinforced by the mediatisation of everyday life and can pose a threat to marginalised groups such as cancer patients. Susan Sontag (1990) has drawn attention to the problematic use of illness as a metaphor and Sarah’s comment clearly indicates an awareness of the stigmatisation that this way of reading illness has for those affected. Besides regulating and defining the emotional style and tone of the public debate about illness, Sarah also used her competence and knowledge to help others and establish caring communities. She testified that blogging and writing are more than just forms of self-expression, it is also a way to support other persons in the same situation: ‘It is a challenge for me to deal with this illness. And it’s my new challenge, my new job, my new business to help others and to be a point of contact for them’. The wish to display one’s own illness in public and to share experiences with an audience, emerged similarly from Emma’s narrative. She reported that she has taken selfies on her mobile phone over the last few years which, in a similar vein as Sarah expressed, should document the different emotional tones of the experienced illness trajectory, including the dark moments. 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