Introduction
In modern Western and Christianised cultures, individuals live and die amidst multiple competing worldviews and ways of life. Secular and religious discourses coexist alongside each other (Berger, 2012) and affect all areas of life up to and including the social and cultural contexts of dying and death. Under the social dynamics of religious pluralisation, individualisation and secularisation, practices and strategies for dealing with existential issues are diverse. Recently, researchers have shown an increased interest in nonreligious ways to deal with mortality and investigated how this growing group of people constructs meaning by relying on resources that are meaningful from within their worldview (Cragun, 2013; MacMurray & Fazzino, 2017; Manning, 2019; Smith & Halligan, 2021; Smith-Stoner, 2007). Notwithstanding their different definitions of ‘nonreligion’ and the remarkable diversity of the nonreligious community (Lee, 2015),1 these studies reveal a shared interest in how affirmatively secular individuals such as atheists and humanists address questions of meaning and make sense of adversity. The idea that all people in serious crises resort to religion (cf. the aphorism: ‘there are no atheists in foxholes’) is proving naïve and unacceptable. This is also confirmed by a number of recent studies. Empirical findings in accordance with terror management theory (TMT) research have demonstrated that strong secular beliefs can serve the same role as religious faith in mitigating existential concerns (Coleman III et al., 2019; Feldmann et al., 2016; Sawyer et al., 2021; Wilkinson & Coleman, 2010; Zuckerman, 2008).2
To date, atheists’ perspectives in the area of dying and death have not been treated in much detail. Especially in the field of hospice and palliative care medicine,3 which has partially religious roots (Randall & Downie, 2006), atheists represent an understudied population (Smith-Stoner, 2007). There is in particular a lack of qualitative studies that explore terminally ill atheists’ responses to death and illuminate the emotional nuances of their process of dying. The temporal experience of 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).
Drawing on one and a half years of ethnographic research conducted among patients receiving palliative care in Switzerland, this study investigates how a nonreligious orientation and other cultural values and preferences influence dealing with the consequences of a fatal illness. Using the case of an atheist, who was chosen as a case study from a sample of 12 patients, I will show how secular beliefs and individualist values engage with the emotional dynamics and meaning making in the last phase of life.
Trzebiatowska (2018) points out that atheism is not only based on an identity which rejects religion, but also expresses a set of affirmed beliefs, which ‘translate into action’ (p. 2). The participant in this case study can be cast as a ‘self-actualisation atheist’ (Schnell & Keenan, 2011) and a supporter of ‘New Atheism’. As LeDrew (2015) argues, New Atheism can be understood as an extension of scientific atheism which ‘moved from being a simple negation of religious beliefs to being an affirmation of liberalism, scientific rationality or the legitimacy of the institutions and the methodology of modern science’ (p. 55). The affirmative stance of this position exemplifies Lee’s (2015) idea of a ‘substantial secular’ (see pp. 58–64). In Lee’s relational approach to the study of secularity and nonreligion, the terms ‘secular’ and ‘nonreligion’ are used ‘to identify a substantive characteristic, a quality that is real and existing in the world’ (p. 33). According to Lee, secular philosophies, like religious ones, establish existential cultures, consisting of a variety of practices and beliefs. These beliefs are ‘bound up with distinctive notions of meaning and purpose in life, as well as with epistemological theories about how it is that humans are able to take a stance on existential matters’ (p. 160). Depending on the situation and locus of action, substantial (non)religious aspects of identities may be salient, play a subordinate role or are irrelevant for social conduct. The negotiation of everyday and extra-ordinary situations in life is guided by (non)religious beliefs and other social, ethical and moral aspects of human existence as well as the available expert knowledge and economical and technological factors. Drawing on her extensive fieldwork with nonreligious people, Lee (2015) reminds us that nonreligious cultures and identities are always messy and multi-layered in practice and have ‘diverse effects, including the capacity to support human and social well-being alongside the capacity to damage both’ (p. 161). In this study, I introduce Lee’s non-binary approach to the study of (non)religion as a framework for exploring how atheist beliefs in relation to other facets of human existence are significant and influential for meaning-making and experiences in the liminal situation of dying.
Background
Traditionally, in Christianity, dying persons followed the rituals provided by priests and the Church. For the individual embedded in a divine order, generally speaking, death marked a transition rather than an end. The process of individualisation began to change people’s attitude towards dying and death in the 12th century and, by ‘the end of the Middle Ages, awareness of the self and its biography became associated with the love of life’ (Ariès, 2008, p. 374). In the face of death, the individuals increasingly became aware of their own lives and the worldly things attached to it, thus changing the meaning of death, as Ariès puts it in exaggerated terms, ‘as an awareness and summation of a life, to death as an awareness and desperate love of this life’ (p. 375). This self-focus was amplified by the rise of Protestantism and its individualistic orientation in the 16th century. Along with modernisation, Protestantism forced secular discourses and spaces that altered human beings’ relation to time, space and the cosmic order. Following Taylor (2007), Lee (2015) argues that the secular and secularity can be seen as conditions of time, space, and thought, which are not ordered according to religious norms and rules. In modernity, these conditions changed the relationship to the existential matter of death and for many people, death became an event completely devoid of religious meaning, marking the absolute end of one’s life and the possibilities of realising it.
This secular relationship with death seems to pose its own challenges. Gronemeyer (1993) points out that in individualistic and highly secularised cultures, in which human beings perceive themselves as active agents who are doers, ‘death always comes too early’ (p. 24). Mellor and Schilling (1993) support this argument and emphasise that the modern cultivation and reflexivity of the self inevitably comes into conflict with death, since ‘this reflexivity is “chronic,” its completion is never envisaged’ (p. 427). Following on from these thoughts, it seems likely that atheists, who commonly value self-actualisation and individualism (Schnell & Keenan, 2011), encounter such dilemmas in dying. However, the implications of nonreligious and secular orientations for dealing with dying and death are not fully understood and have seldom been illuminated with examples of atheists facing imminent death. It has previously been observed that ‘there are currently more questions than answers regarding how the nonreligious negotiate death and dying’ (Smith & Halligan, 2021, p. 19).
A recent qualitative study by Ardelt & Koenig (2007) found that both religious and nonreligious people with individualistic goals and behaviour experience emotional vulnerability when faced with the consequences of terminal illness. The authors indicate that ‘an individualistic sense of meaning is unable to sustain subjective well-being at the end-of-life’ (p. 77), as the realisation of personal plans and goals is hindered by terminal illness. A rather specific problem for the nonreligious to manage death seems to be the lack of shared rituals and traditions. MacMurray & Fazzino (2017), who examined death and bereavement among nonreligious Americans, highlight that death is a social area ‘where the nonreligious are disadvantaged by a lack of an institutionalised nonreligious death culture’ (p. 281). Concurrent with this observation, the authors emphasise that this lack is also an asset for the nonreligious with their strongly held secular values of authenticity and individualism. The absence of established practices and rituals would offer them ‘some freedom to manage death however they see fit’ (p. 297). As an example, MacMurray & Fazzino mention the internet which provides resources and opportunities to deal with existential issues outside prevalent customs. Furthermore, Manning (2019), who has investigated meaning-making narratives among nonreligious individuals facing the end of life, emphasises ‘that meaning is something human beings create by drawing on various cultural resources that are available to us’ (p. 83). Based on her empirical findings, she suggests ‘that secular schema may provide an alternative framework through which people create meaning’ (ibid.). Yet more importantly, ‘there is frequent mixing, like secularists who tell mystical stories, or religious individuals whose stories are entirely framed by luck’ (ibid.). Secular schemas for achieving meaning in the ‘here and now’ might be the belief in science, education, or social activism (Coleman III et al., 2019). When it comes to existential matters, recent studies have shown that secular orientation and the lack of belief in life after death does not manifest itself in high levels of death anxiety (Cragun, 2013; Zuckerman, 2008). Zuckerman (2008), who studied attitudes towards death and meaning in life among nonbelievers in Scandinavia, found that death is widely accepted as natural in this group. At the same time, however, he mentions that some of the atheists he interviewed reported that they pondered their own demise with some concern as they grew older and the end of their life came closer (see pp. 64–65). This observation draws attention to the fact that attitudes towards death change over the life course and must be considered in relation to time and the particular social location. In this respect, it seems to make a difference whether one is young and healthy or directly confronted with one’s own finitude. From my own research experience, I know that, in the face of imminent death, there is usually a complex interplay between psychological components, cultural-religious factors, and social aspects that influence the experience of dying. As I aim to show, the interplay of these components gives rise to ambivalent states of mind at the end of life rather than clear-cut answers and attitudes towards death.
Methods and Data
As noted above, this article is based on a single case study. I selected the case from a sample of 12 terminally ill patients of relatively high social class who I met between 2020 and 2022 in Switzerland. I chose an open and process-oriented ethnographic approach, which also accounts for digital media and technologies (Pink et al., 2016), to explore my participants’ end of life journeys. Over a period of one and a half years, starting in March 2020, I made several short field visits. Because of the participants’ poor health and need for privacy and retreat, it was difficult to follow them closely over a longer period of time. In addition, my research was complicated by the COVID-19 crisis. Field access, which was provided by two urban hospitals with palliative care units and a hospice in a rural area, was at times hindered during lockdowns, and I had to communicate with some participants via video conferencing, e-mail, or WhatsApp. The overall study consists of several ‘short-term ethnographies’ in which ethnographers clearly indicate their intentions and engages participants in their projects. Pink & Morgan (2013) argue that short-term ethnographies are by no means ‘quick and dirty’ and less valuable than long-term engagement, but ‘go beyond observation’ (p. 353) to create encounters which benefit from the production of forms of intensity and empathy. My methodological approach was designed to adapt to the participants’ difficult living conditions and provide options for collaborative research. By letting them decide how they wanted to interact and communicate with me, collaboration and self-determination should be strengthened and vulnerability thus mitigated.4
Extreme case approach
In the preliminary analysis, I assessed individualism and collectivism domains in the initial 12 cases, adopting Oyserman’s et al. (2002) scale, to get an overview of the participants’ life orientation. Among the participants, individualism and collectivism domains emerged in domains and intensities (Table 1). In the case examined in this article, however, individualism domains were pronounced most strongly, making it an extreme case in relation to the sample. Given the uniqueness of the case, I opted for reporting it in this independent substudy. The extreme case approach, which strives to achieve a more in-depth understanding of the nature of the phenomenon under study, can be useful to present research findings (Jahnukainen, 2010). The selected case makes it possible to effectively demonstrate a main point of the overall study—namely that the unending work of self-development and self-actualisation at the end of life has both a positive and a negative side.
Table 1
Individualism and collectivism domains of the 12 cases comprising the overall sample. Scale adopted from Oyserman et. al. 2002.
| INDIVIDUALISM DOMAINS | COLLECTIVISM DOMAINS | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| DOMAIN | INDEPENDENCE | GOALS | COMPETITION | UNIQUENESS | SELF-KNOWLEDGE | COMMUNICATION | RELATIONALITY | BELONGING | DUTY | HARMONY | GROUP ORIENTATION |
| Description | Freedom, selfsufficiency, and control over one’s life | Striving for one’s and achievements | Personal competition and winning | Focus on one’s idiosyncratic | Knowing oneself; having a strong identity | Clearly articulating | Considering close others an integral part of the self | Wanting to belong to and enjoy being part of groups | The duties and sacrifices being a group member | Concern for group groups get along | A preference for |
| Case profile | |||||||||||
| Karl, male, age: 62, physicist, nondenominational | x | x | x | x | x | x | |||||
| Hilda, female, age: 79, librarian, Protestant | x | x | x | x | x | ||||||
| Francine, female, age: 66, IT specialist, Roman Catholic | x | x | x | ||||||||
| Paul, male, age: 60, denominational | x | x | x | x | |||||||
| Marta, female, age: 80, body therapist, Protestant | x | x | x | x | |||||||
| Remo, male, age: 73, deacon, Protestant | x | x | x | x | x | x | |||||
| Claudia, female, photographer, Roman Catholic | x | x | x | x | |||||||
| Hans, male, age: 78, psychotherapist, Roman Catholic | x | x | x | x | x | x | x | ||||
| Julia, female, age: 48, blogger, nondenominational | x | x | x | x | x | x | |||||
| Anna, female, age: 54, teacher, Roman Catholic | x | x | x | x | x | x | x | ||||
| Friedrich, male, age: 87, deacon, Protestant | x | x | x | x | |||||||
| Edith, female, age: 101, secretary, Protestant | x | x | x | x | |||||||
Participant
Karl, the extreme case from the overall sample, was introduced to me through a personal contact.5 In October 2019, the 62-year-old atheist and physicist was diagnosed with stage IV metastatic lung cancer. At the time of the interview, the doctors predicted a life expectancy of barely one year. Karl had grown up in a relatively large city in Switzerland in the 1960s and came from a long generation of natural scientists. After studying physics, he worked in several international companies, most recently as the manager of a manufacturer of optical equipment. He is divorced and has three adult children. After early retirement, he bought a house in Greece, which he renovated himself. There he also made his first nature documentary, a life dream which had occupied him ever since he was a teenager. In March 2020, when I conducted the interview with him, he had moved back to the Swiss city where he had grown up. He seemed to struggle considerably with the situation and was in an emotionally complex psychological state. After the interview we were in contact by e-mail several times but did not manage to meet personally.6 Karl died two years later, in March 2022, in one of the city’s palliative care stations, as I was informed by my contact.
Data collection
I conducted a photo elicitation interview with Karl in the form of ‘reflexive photography’ (Lapenta, 2011). Reflexive photography allows interviewees to talk openly about pictures they have chosen or taken themselves and thereby conforms to the call by researchers to avoid overtly religious vocabulary in interviews (Cragun, 2019; Day, 2010). Through visual representations we can learn about how people feel, see, and experience the world (Pink, 2004). Preceding the interview, I emailed Karl the following request:
Please choose one or more photographs for the interview and send it to me before the conversation. The pictures should in some personal manner be related to your illness, your current situation, or some aspect of it. The photographs can be appropriated or taken by yourself. They can, for example, be from a personal collection, from the Internet, or a magazine.
The interview took place on March 12, 2020, based on two photographs. Both were self-portraits of Karl. Due to the pandemic and the risk of possible infection with COVID-19, we conducted the interview online. The data were recorded on a digital audio recorder and transcribed subsequently. Quotations in this article were translated from Swiss German to English and therefore do not reflect all original nuances and subtleties. After the interview, I requested more photographs to get a more detailed picture of his life story and to strengthen the research findings. On May 17, 2020, I received 10 more pictures from Karl by e-mail. Two of them are displayed in the results section.
Data analysis
I used an open-coding approach to analyse the interview data and the photographs. For exploratory case studies, working from the ‘ground up’ is an obvious and beneficial strategy (Streb, 2010), which has been, for example, demonstrated in grounded theory research (Glaser & Strauss, 1967). My analytical path was inspired by Geertz’s (1957) notion of worldview and ethos:
A people’s ethos is the tone, character, and quality of their life, its moral and aesthetic style and mood; it is the underlying attitude towards themselves and their world that life reflects. Their world-view is the picture of the way things, in sheer actuality are, their concept of nature, of self, of society (p. 421).
To get a detailed picture of Karl’s worldview and ethos, I assigned codes to the data, each code representing a concept or abstraction of potential interest. The insights I gained allowed me to illuminate key aims of this study: first, to reconstruct Karl’s attitudes, beliefs, and values, and second, to understand how this way of seeing the world engages with emotions and meaning making in the last phase of life. The case study findings are divided into two parts. Part one identifies key themes in Karl’s narrative and photographs. Four themes emerged from the data: (1) personal myth, (2) authentic way of living, (3) naturalism, and (4) growth and future-orientation. Part two highlights how these beliefs and attitudes influence emotions and experiences while dying. Themes associated with this dynamic are: (1) loss of meaning, (2) dreaming on, and (3) friendship.
Results
Part one: Worldview and ethos
Personal myth (1). Karl’s worldview as constructed in the narrative is highly influenced by a personal myth rooted in the period of the 1960s and 70s. Myths are an essential part of (non)religious imaginaries and can have ‘agentive force’ (Stacey, 2020, p. 4) on an individual’s life and feelings. In addition to cultural myths, in pluralistic societies personal myths play an important role for the individual. As Krippner (1990) argues, personal myths provide ‘meaning to the past, understanding to the present, and direction to the future’ and they ‘perform the functions of explaining, confirming, guiding, and sacralising experience for the individual in a manner analogous to the way cultural myths once served those functions for an entire society’ (p. 131). In Karl’s narrative, one central story stood out that explained his appreciation of nature as well as his lifelong fascination with film. His personal myth centred on the charismatic pioneer in marine research and documentary filmmaker Jacques Cousteau. According to Karl’s account, Cousteau is ‘one of the most famous Frenchmen in the world’ who brings ‘a deep understanding of nature into people’s living rooms.’ As a teenager, Karl was strongly attracted to the way of life expressed in these films:
And when I saw those guys there, that was so in the 70s of course, all long hair, raucous beards, hippie types, guitar over the shoulder, on the ship, self-built underwater cameras, and this attitude to life, I thought, hey, that’s it [original in English], that’s your thing.
Cousteau is described as a pioneer with an innovative spirit, living a free life on a boat with like-minded companions. Cousteau appears to be a role model who encouraged Karl to discover his own fulfilment. Karl’s expression—‘that’s your thing’—fits Taylor’s (2007) definition of expressive individualism, ‘in which people are encouraged to find their own way, discover their own fulfilment, “do their own thing”’ (p. 299). Karl was fascinated by ‘this attitude to life’ and the representation of nature in Cousteau’s films. He explained that nature is a source of awe, a claim which atheists often make (see Caldwell-Harris et al., 2010). Karl shared ‘I have an infinite awe of and humility for what we humans call nature. The more I immerse myself in it, the more amazed one becomes.’ The story Karl created around Cousteau was an avenue to make sense of his own pursuit of an artistic lifestyle, as well as his way of seeing such a lifestyle and his own feeling of attachment to it. As we will see in the next section, the personal myth of Cousteau performed, as Krippner (1990) elucidates, the function of retrospectively explaining, confirming, and guiding Karl’s experiences, emotions, and actions.
Authentic way of living (2). The theme of authenticity was highlighted by the adjective ‘pure,’ which Karl applied to both emotions and nature in a revealing statement about himself. He stressed that film is a ‘combination of science, engineering, technology, purest emotion, purest nature, that describes me best’ [emphases added by author]. The importance of filming and the unadulterated emotions that accompany the activity were also evident in the visual data. The photograph that our interview started off with was a self-portrait which depicts him in profile against a deep blue sky working on his film. He emphasised that the picture ‘actually expresses a lot about who I am. And not only who I am, but where I really feel at home with myself.’ Filming is an aesthetic source that gave Karl a sense of life’s depth and offered him a possibility to connect with the desired world of Cousteau. He stated that the nature documentary he made after retirement was an attempt to ‘express this Jacques Cousteau zest for life from those days in my own way.’ The film would reflect his entire worldview and soul: ‘And actually, it is the expression of my whole worldview and of my soul, which has its origins in the time I have just described. That is now 50 years ago, when I was 11 or 12.’
Taking a more analytical stance, the romantic and nostalgic mood expressed in the narrative and the photographs indicate a longing for countercultural dropping out and lifelong search for an authentic way of living that became popular in the 1960s (Taylor, 2007). Filming can be interpreted as a way of ‘authentic homecoming’, which in Karl’s case involved a shift from the ‘inauthenticity’ of bourgeois life to the aesthetic realm of pure emotion and expressivity. The vanishing point of his longing is Cousteau’s way of life, which forms a counter-concept to the prevailing culture, as is also the case, for example, in artistic avantgardes or so-called new religious movements (Clarke, 2005) of this time. Scholars have pointed to the attractiveness of countercultural orientations to young, especially educated baby boomers and demonstrated how these countercultural ties influenced (religious) beliefs and behaviours (Sherkat, 1998). The spirit of that time is characterised by certain values, such as passion, creativity, and expressivity, which are recurrent in Karl’s narrative and photographs. He explained that one of his lifelong dreams was circumnavigating the world with ‘passionate comrades’ that he would captured cinematically in a type of ‘emotional life documentary.’ He also mentioned friends in the interview who shared his attitude towards life and would embark on such a journey with him. Although he followed a career, the nostalgic longing for a place outside bourgeois culture persisted until his life’s end: ‘My life has been different from this dream, but it has never left me.’ The worldview’s rapturous and nostalgic tone was also apparent in one of his photographs. The high-resolution image shows a sunset in Greece, which, in the realm of his experience, takes the meaning of romantic longing for the unattainable and the authentic (Photo 1).
Photo 1
Sunset in Greece. Photograph taken by Karl. Archive of the author.
Naturalism (3). It emerged from the data that, for Karl, nature was not only an object of appreciation, but the centre of life and reality. His thinking and reasoning were highly influenced by a naturalism that urges that ‘reality is exhausted by nature, containing nothing “supernatural”’ (Papineau, 2021, introduction section). Karl seemed convinced that ‘There is no rebirth. The second you die, the system is off [original in English]’. He emphasised that ‘I don’t believe in any God, Christian, Mohammed. I don’t care [original in English]’. Moreover, he attributed the emergence of both emotions and religion to a natural occurrence, affirming Dawkins’ (2006) theory of religion as a ‘by-product’ of cognitive processes. Karl said: ‘Everything that we feel in terms of emotions in our whole life and everything which creates a religion and so on […] you can also call it a product, of a development of our brain […].’ This idea assumes that evolution ‘happened through purely material mechanisms that are in principle accessible to scientific investigation, whether they have yet been discovered or not’ (Johnson, 2001, p. 61). Karl maintains an epistemological position common to the New Atheists who believe in the ‘epistemic authority of the natural science’ (LeDrew, 2015, p. 57). The naturalism he advocated and his denial of the existence of supernatural entities also influenced his dealing with his fatal illness. He held that ‘Now, of course, when you get such a fatal cancer diagnosis, you could say, dear God, why have you abandoned me? A lot of people do that, but I don’t. Because it neither harms nor helps me.’ The data revealed that Karl’s view of death describes a sense of natural order to living and dying, as many atheists do (see Smith-Stoner, 2007). Karl emphasised that all life originates in the sea and is likely to return to it: ‘And that’s where we all come from and that’s where we all might go again.’ Furthermore, he expressed the view that the idea of his own death does not frighten him: ‘And now it’s obviously then my turn soon and I can talk about it like this today without it shocking me.’ Although Karl appeared to have no fear of dying, it was evident from the data that the ethos of his lifestyle made it difficult to find closure and accept death. To this I will return.
Growth and future-orientation (4). It stood out that an important part of Karl’s self-concept, which comprises the set of beliefs a person has about themselves, including personality traits and an understanding of social roles and relationships (Baumeister, 1997), was being a doer. This belief was both evident in his narrative and the obtained visual data that showed him, for example, filming, or they depicted complicated technical installations he had made himself in his house in Greece (Photo 2). In a brief portrayal of his life, he highlighted projects he had realised and private and professional successes and achievements:
Photo 2
Self-built technical installation in Karl’s house in Greece. Photograph taken by Karl. Archive of the author.
I was an active musician for 15 years. I did carpentry privately for 10 years because it fascinated me so much. I did garden design as a hobby. I created a biotope. I had my own company. I did pioneering research. I built the house in Greece. I was married for 24 years and so on and so forth. Have achieved the highest professional position a physicist can achieve. I made the film.
In societies which emphasise individualism, the self is created more through individual achievements and successes than through group memberships (Oyserman, 2001). The use of the first-person pronoun ‘I’ throughout the comment above is a clear indicator of the focus on self-actualisation as a means to fulfil personal wishes, needs, dreams, and goals. Karl highlighted both his achievements and successes and emphasised practical skills, such as craftsmanship and scientific excellence. Karl can thus be cast as a so-called ‘self-actualisation atheist’. ‘Self-actualisation atheists’ are committed to values such as freedom, individualism, self-knowledge, and knowledge-based worldviews (Schnell & Keenan, 2011). Overall, Karl’s self-portrayal painted a self-image as an ambitious doer. The aggregation of projects as the accumulated ‘life capital’ (Gronemeyer, 1993, p. 103) reflects an individualistic ethos of growth with progressive ambitions. A life’s focus on personal projects, dreams, and goals is almost naturally accompanied by a strong drive towards the future. Karl explained that he always had ‘visions of the future. Like the old Soviet five-year plans.’ Since there is no life after death for Karl, ‘this one single life is to be experienced as broadly as it is at all possible.’ One has to be ‘EXTREMELY active’. For him, life was, to use a phrase from Gronemeyer (1993), ‘the only chance’. His comments indicate that one has to take advantage of the single life opportunity to the fullest and not waste time.
Part two: Dynamics of meaning making
Loss of meaning (1). Although Karl considered death a part of the natural order, his imminent death caused some strain. In view of the lack of time and the physical limitations imposed by his illness, a sense of despair arose. For the ‘self-actualisation atheist’ Karl, visions were the ‘goal’ and ‘joy’ of life, yet with the cancer diagnosis, ‘that has crumbled to zero.’ Owing to the disease, he could no longer make plans: ‘I can’t make any plans, I can’t say, in October I’ll then paint the wall of the house in Greece. Those thoughts don’t exist anymore. It’s a new life because you can’t make any plans.’ Theoretically, the doctors still gave him time to live, but the uncertainty brought on by the poorly calculable course of the disease destroyed his thoughts of the future. Karl conceded: ‘I haven’t been able to come to terms with that to this day.’ Appalling for him was not death itself, but the realisation: ‘That’s it, with your life visions.’ Ariès (2008) pointedly captures the situation in which individualistically oriented people like Karl might find themselves when illness or old age prevent them from living their accustomed life:
The day comes, however, when the individual can no longer keep pace with his progressive ambitions. He moves more slowly than his desire, he falls further and further behind, and he realizes that his model is becoming inaccessible. (p. 373)
Karl’s realisation that his life model was no longer attainable eroded his sense of meaning. He compared this experience with a ‘trapdoor’, emphasising that it is a ‘feeling, one can’t convey’. The trapdoor illustrates the sudden loss of his sense of ontological security, which is achieved through the belief in the continuity, reliability, and consistency of the inhabited social world (Hewitt, 2010). Once taken-for-granted securities, such as the possibility for self-actualisation, were suddenly lost due to the fatal illness. Movement and growth, which characterise Karl’s individualistic ethos, became overshadowed by the experience of motionlessness, caused by chemotherapies, as he explained: ‘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.’
Dreaming on (2). The romantic mood of Karl’s worldview and its individualistic ethos were not only a burden; the ethos simultaneously helped to manage the crisis and to keep himself and his self-image alive. It emerged from the data that he was continuing to pursue his dream of circumnavigating the world both offline and online. The comment below illustrates that he had not given up on this vision despite the serious illness. Pursuant of this dream, he played the lottery:
[…] because I play Euro Millions lottery. And if I hit the jackpot tonight, what do you think I’ll do tomorrow? I’ll buy the ship! […] And if I only sit on it for another year or 6 months. I couldn’t care less. Then I’ve experienced it. That’s what I’m like, that’s me.
Lagerkvist & Andersson (2017) argue that ongoing project realisation in dying keeps death at bay: ‘As long as you keep writing, updating, photographing, and uploading you can’t die!’ (p. 558). These life-sustaining projects, which today are increasingly connected to online worlds, can be considered as a consolation in the human’s race against time. Playing the lottery testifies to Karl’s race against time, accelerated by his awareness of imminent death. Despite very low chances of winning, the strategy of playing the lottery enabled him to keep on dreaming and to uphold continuity in his self-image threatened by a fatal illness.
Another resource, which he relied on to keep his dream alive while dying, was the Internet. The Internet offered him—as it does other nonreligious people (see MacMurray & Fazzino, 2017) — a resource to deal with adversity outside prevalent religious customs. When asked about sources of meaning in his difficult situation, he said ‘Well, I’m living out my last dream digitally’ and ‘Jacques Cousteau sends his regards’. By relying on digital technology as well as inner resources, 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. […]. I calculate gearboxes, I deal with MAN diesel engines or Furuno ship radars for hours without end. […]. 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.
Surfing the Internet provided Karl a means to (re)connect with Cousteau’s world and the desired way of authentic living. Karl’s ‘digital homecoming’ had energising potential and increased his emotional well-being, as his expression ‘incredible pleasure’ highlights. The sense of rootedness was anchored in the spirit of Cousteau’s world, whereas with help of the Internet, which enables imaginary journeys, Karl could explore long desired and unknown horizons. Together, this rootedness and flow contributed to his well-being at the end of life, driven by a highly individualistic ethos and romantic mood of longing for places outside bourgeois culture. In this sense, the emotional well-being Karl experienced is more than just the expressed feeling of ‘incredible pleasure.’ It is an experience of connectedness with his sense of self and the desired authentic way of living.
Friendship (3). Another form of rootedness that increased Karl’s emotional well-being while dying was friendship. Although social relationships were a rather marginal topic in Karl’s narrative, it emerged from the data that friendship and interpersonal relations were essential to him, a value that is important to many atheists at the end of life (see Smith-Stoner, 2007). He emphasised that psychologists and pastors could not help him: ‘What are they supposed to tell you? I put it bluntly, black and white. I’m not the right type for that.’ Instead of talking to professionals he often met an old friend with whom he had a ‘genuine male friendship’. Karl commented that ‘he doesn’t ask. He is just here’. This mutual and tacit understanding and presence, which created continuing bonds, were an important resource to deal with the difficult situation: ‘To have people like that who are just there as a person and know me well with all ups and downs. […] And you just go on with these relationships, with a different awareness of course, but you don’t have to say it out loud. That helps me the most.’
Discussion and Conclusion
This case study shows that a personal myth, romantic longing, atheist beliefs, and individualist values bestow a complex emotional tone on Karl’s negotiation of dying and death. By and large, the findings of this study support Lee’s (2015) assumption that nonreligious cultures are messy and ambivalent in practice and need to be examined in relation to the other conditioning factors of human life. Especially in existential situations such as dying, one’s own history and ways of seeing the world as well as social, cultural, institutional, and technological factors come into play as totality. To understand Karl’s response to death, the substantial nonreligious aspects of his identity must be juxtaposed with his overall life model and the cultural resources at hand. Along with the affirmation of naturalism, the myth of Cousteau and the romantic mood of longing are salient features of Karl’s worldview, which informed the way illness and death were dealt with. These features imbued the journey of dying with a sense of permanence and allowed him to find meaning in an extraordinary situation. At the same time, Karl’s individualistic attitude made it difficult to find closure and accept death, at least at that moment when I met him. To conclude, I will briefly discuss this ambivalent state of mind at the end of life in relation to the literature included in this paper and emphasise the importance of situation-specific interpretations of people’s negotiations of dying and death.
Even though Karl’s belief in naturalism made it possible to integrate death into life as a natural fact, death remained deeply problematic because it robbed him of the opportunity to realise outstanding projects and dreams. This result confirms the problem that, confronted with one’s own finitude, individualistic human beings realise that their self-project will ultimately be incomplete, thus making it difficult to give meaning to death in the framework of their worldview (Mellor & Shilling, 1993). It might be the case that religious people have a greater fear of dying than do nonreligious people, as previous research has suggested (Cragun, 2013), but that does not mean that the latter will necessarily navigate the end of life journey well. The results of this study highlight that Karl’s awareness of a limited future time perspective is connected with negative emotions, since the accustomed way of life can no longer be realised. When faced with the consequences of terminal illness, the unending work of self-development and self-actualisation begins to reach its limits. This challenge has already been noted by other case studies of highly individualistic, religious people approaching death (c.f. Ardelt & Koenig, 2007). It can be thus assumed that a life that focuses on the pursuit of personal plans and goals leaves both religious and nonreligious people vulnerable at the end of life. In my own ethnographic research, I could observe that a devout Protestant experienced similar difficulties to Karl at the end of life (Metzger, in press).
Furthermore, the results of this study suggest that attitudes towards dying and death need to be evaluated in relation to the situation people are in. Comparable to some of the atheists in Zuckerman’s (2008) study, Karl’s concern about his own demise arose from his heightened awareness of the closing of the life horizon. His atheist beliefs had undoubtedly a protective function against the fear of death, yet other forces, such as the romantic-individualist ethos, were equally important in dealing with illness and finitude. One reason why the relationship between dying behaviour and individualism has received little attention in the empirical literature may be that in most cases the people interviewed are not directly confronted with their own mortality. A distanced view of death seems to emphasise philosophical questions and beliefs rather than practical challenges such as time scarcity. Accordingly, the results of this study should be seen in relation to the realities of a particular stage of an individual’s dying process. The practices, experiences, and emotions that I illuminated in this article provide only a snapshot of Karl’s end of life journey. Perhaps his attitude towards death changed over time; perhaps this attitude remained the same until death and there was never a sense of reconciliation and acceptance, as previous studies in the field have reported (Kübler-Ross, 2009; Saunders, 2003).
Concurrently, Karl’s strongly held values of authenticity and individualism enabled him to attain a personal sense of meaning in dying. Although his way of life correlated with a crisis, it also helped him to stay active and not lose hope in a difficult phase of life. The findings demonstrate that imminent death motivated him to identify with salient features of his worldview, which imbued the journey of dying with a sense of permanence. In addition to atheism, cultural imprinting from the 1960s and 70s played a key role in Karl’s negotiation of dying and death. These observations are in line with the basic tenets of TMT (Solomon et.al., 2004) and can be elucidated by using the example of the myth of Cousteau. This myth inspired Karl’s actions and imagination throughout his entire life until his death. As noted by Stacey (2020), myths play an important role in (non)religious imaginaries and have an action-guiding function: ‘Certain characters ignite the imagination and inspire people to imitate them’ (p. 3). Maintaining his personal myth and the romantic-individualistic ethos, Karl kept pursuing his visions and thus achieved a sense of temporal well-being and a feeling of self-connectedness in dying. Manning (2019) reminds us in this regard that ‘we should pay more attention to the behavioral and emotional aspects of meaning making rather than just the intellectual ones’ (p. 83). The present study highlights this emotional dimension of meaning-making by showing that finding meaning at the end of life does not necessarily have to involve reflection or spirituality but can be achieved through the joyful (re)connection with one’s own longings and desires. In a similar way to previous studies that have characterised nonreligious approaches to death (MacMurray & Fazzino, 2017; Manning, 2019), Karl managed to uphold a purpose in life that was meaningful from within his worldview, capabilities and resources. Supported by his atheist view of nature, a personal myth, imagination, creativity, friendship, and the Internet, Karl navigated his end of life journey outside religious norms according to his personal needs and desires.
The findings I have presented here, of course, are limited, which is true for all case studies. Nevertheless, I hope that this study contributes to the emerging discussion and literature on nonreligious perspectives on end of life issues. Overall, the findings indicate that we need more self-reported accounts of terminal illness in order to understand the nuances and complexities of the individual responses to this existential situation. The navigation of life and death cannot be captured with narrow categorisations and need to be explored with methodologies and concepts that do not dichotomise religious and secular meaning systems per se. In addition individualist values shared by both religious and nonreligious people in current Western societies should be given more attention when researching end of life experiences.
Notes
[1] Established definitions of nonreligion distinguish forms and levels of nonreligion and secularity by the different ways they relate to religion but are nonetheless distinct from it (Lee, 2015; Quack, 2014).
[2] TMT holds that the awareness of death and the potential terror triggered by it engenders a need for the anxiety-buffering features of cultural worldviews (Solomon et. al., 2004).
[3] The World Health Organization (2020) defines palliative care as follows: ‘Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual. Addressing suffering involves taking care of issues beyond physical symptoms. Palliative care uses a team approach to support patients and their caregivers’ (https://www.who.int/news-room/fact-sheets/detail/palliative-care).
[4] The author is committed to an ethical and sensitive research approach in accordance with the principles of professional responsibility of the American Anthropological Association at http://ethics.americananthro.org/category/statement/. The project was reviewed by the Ethics Committee of the Canton of Zurich (Declaration of Competence BASEC-No. Req-2019-00221, Cantonal Ethics Committee Zurich, Switzerland).
[5] The name of the interviewee is a pseudonym. Details such as names of places and third parties that could lead to an identification of the informant were removed from the article.
[6] Written informed consent was obtained from the participant after the interview. I informed Karl in May 2021 that I planned to write a whole article about his case, and that complete anonymisation would not be possible without losing important details of the story. I wanted to know whether he considered this a problem or not. He replied, ‘in principle I have no problem if someone should recognise me … it’s just a fact, and one of my “wisdoms” has always been: “… nothing but the truth…”’ (personal communication [e-mail], Karl, May 13, 2021).
Acknowledgements
I am grateful to Karl and the other dying people who shared their experiences and life stories with a stranger.
Funding Information
This study was funded by the Swiss National Science Foundation SNSF under grant number 188869 as part of the project ‘Settings of dying—an interdisciplinary perspective 2020–23’ (https://sterbesettings.ch/en). Editing and proofreading of this article was kindly supported by the Zurich University of the Arts ZHDK.
Competing Interests
The author has no competing interests to declare.