Abstract
In the cultural imaginary of death and dying, the felt contours of grief are still often taken for granted. Grief is predominantly understood as sadness at loss; as melancholia at the finitude of relationships. Grief is conceived as a temporally-bound affective period in which one processes the pain of loss – that is, gets used to absence and works toward ‘moving on’. In this article, we centre the accounts of people caring for the dying, or recently having experienced the death of a loved one to cancer, to advance a sociological analysis of grief that untethers it from this normative environ. In the lives of those living with death, we argue, grief evades social conventions and temporal limits. It is a spectral presence that shows little concern for expected affective crescendos (being at death’s door/just departed). In its unruliness, grief reveals and resists the normative scene of death and dying, as collective pressure – for closure, for forgetting, for moving on – amplifies rather than ameliorates its felt experience. Centring the experiences of carers, we thus argue for an enlivened sociology of grief that illuminates its disruptive temporality, its haunting spectrality, and its propensity to instigate both affective refusals and (attempted) moments of collective catharsis.
Introduction
Dorothy Holinger (2020) aptly characterises grief as a chameleon: a shapeshifter that evades easy characterisation and, at times, detection as it channels itself through other parts of life. The chameleon is analogous for many reasons. Grief masquerades. It seems to have departed but has often merely moved beyond our field of vision, or perhaps our willingness to view. It is an absent presence (Hetherington, 2004; Maddrell, 2013) in the jostle between living on vis-à-vis grieving through (Neimeyer et al., 2014). Grief, at least as mediated in and by social life, has a beyond-the-present yet occupying-the-present quality. It is something to be resolved, yet something that endures just below the surface. Grief is often a site of social discomfort (Walter, 1998), centred on a sense of incompleteness and (unwelcome) return (Hetherington, 2004), albeit highly differential across cultures and times (cf. Granek, 2010; Jacobsen, 2016; Small et al., 2009). It is temporally complex, particularly as it is revealed in this article – anticipatory of the future, occupying of the present, and embodying loss of the past. Such spheres collide to configure the complex sociality of grief (Jakoby, 2012; McCreight, 2004) with respect, in this case, to caring for the dying.
In the context of death and dying, grief is typically about the loss of another, whether forthcoming, imminent, or just past. 1 As popularly represented, it is largely about the sadness and sorrow experienced in the immediate aftermath of the loss of a relationship, and about the trauma recent loss sometimes presents. But there is much more to grief than this (Harris, 2010), as many scholars have alluded to (Rosaldo, 1989; Silverman et al., 2020; Walter, 2002). Grief evades ideas about timeliness; moves beyond and between persons; inflects and is inflected by what is occurring in the cultural, economic and political scene (Kenny et al., 2019; Kumar, 2023); and poses a fundamental challenge to the normative scene of functional attachment and detachment (Wakefield, 2015). Grief is messy and muddled, moving through and across aspects of the lifeworld, never completely tethered to a single moment (Cunsolo & Ellis, 2018). Indeed, grief articulates and arises from attachments and connectedness that extend beyond biophysical death (Lund, 2021) as vital connections endure (Gartner, 2008) or become accentuated over time. Yet, paradoxically, grief is often fuelled by the very structures that seek to moderate it, with the cultural pull toward closure and healing (Walter, 2007) rubbing up against grief’s – and the deceased individual’s – capacity to endure (Brinkmann, 2020).
In this article, we progress a sociology of grief in the context of death and dying that foregrounds these temporal and normative complexities and contradictions. Drawing on the accounts of people either caring for someone approaching the end of life as a result of cancer, or having recently cared for someone who died, we ask, how is grief experienced, what is it assumed to be, and how might it be different? In seeking answers to these questions, we offer an articulation of grief as generative, unwieldy and decidedly non-linear. We develop a conceptualisation of grief as temporally untethered – unsettling the living and haunting the bereaved – and push for greater emphasis on practices of refusal, lingering and (attempted) catharsis therein. In doing so, we add to the emergent sociological scholarship on loss and bereavement (Blum, 2015; Jacobsen & Petersen, 2020; Lund, 2021), further developing a temporally disruptive lens that progresses efforts to centre grief as a vital and generative relation.
Conceptualising grief
What is it about grief in death and dying that makes it so uncomfortable, and that feels so out of the ordinary? And why does it demand action (collective or individual) to ameliorate its pain – or, indeed, its disenfranchised status (Doka, 2008)? The management of grief is but one facet of the broader machinations of resistance to confronting death and dying (Walter, 1991). But it takes on a contemporary flavour in the context of advanced capitalism (cf. Lauro & Embry, 2008). Grief thoroughly interferes with the neoliberal project’s steady march of productive citizenry, and reveals (ghostly) continuities not routinely valued in the current milieu (Árnason & Hafsteinsson, 2018; Comaroff, 2010; Macdonald, 2020). Longing, remembering, reflecting, reminiscing, slowing and waiting, after all, are affective postures not routinely associated with the valorised subjects of a happy and ‘productive’ life (Kofod, 2020; Schweizer, 2008). Collective responses to these affective states are thus often pernicious, with contemporary binaries between ‘normal’ and ‘pathological’ playing a disciplinary role in the normative scene of grief (Brown & Stoudemire, 1983; Jacobsen & Petersen, 2020; Lund, 2021). Grief, as our interlocutors’ experiences illuminate below, is frequently medicated, subdued and partitioned, even as death itself is rendered ‘spectacular’ via its mediation and commercialisation (Jacobsen, 2016). In grief for the dead and dying specifically, we are given ‘time out’ from the demands of productivity – yet this time is limited and conditional (Walter, 1999). The practice of (unwieldy) remembrance is not encouraged beyond a certain temporal boundary. It becomes ‘complicated’ (Gilats, 2022), in clinical parlance, once it extends beyond these socially enforced limits (Kofod, 2020; Lund, 2021). Nonetheless, grief does not play ball. As Gilats (2022, p. 82) describes in her book After Effects – a memoir of her partner’s death, comprised of the letters she wrote to him after his death: We are expected to recover from even our most grievous losses by traveling a relatively straightforward psychological progression from the actual loss (bereavement), to our responses to that loss (grief), to learning to live with our loss (mourning), and to the return to a satisfying life (recovery). Along this path we might encounter ditches and detours, but experts agree that recovery from acute or ‘active’ grief is as normal as grief itself. But what if we cannot meet this expectation? What if this so-called recovery is somehow disrupted or undermined? What if these ‘normal’ processes take an abnormally long time to take hold? What if they fail us altogether? What if something inside us will not allow us to release ourselves and move forward?
In sociological terms, the ‘something inside’ noted by Gilats (2022) is the felt reality of relations that continue beyond the grave. Grief, after all, is the consequence of connection – to use Brinkmann’s (2020) phrase, it is the ‘price of love’ (see also Lund, 2021). In contrast, demands for closure are deeply embedded in the financial-industrial complex of modern societies. Grief is undoubtedly ‘hard work’ (Pratt, 1981), but it is misaligned with the productivity demands of the economic scene (Pitimson, 2021). The time-to-normal expectations surrounding grief – the way that grief is permitted, but only within strict temporal bounds – thus represent an effort to manage the tensions that arise between the relation of intimacy/love and the relation of economy/productivity.
As Berns (2011) explores in her book Closure, the ‘art of the managed end’ – the ability to complete, and to close something off – has become a form of capital that at times jars with the undulations of everyday emotions: Closure typically implies that something is finished, ended, closed. Finally you can move on. Yet this dominant use of closure receives plenty of criticism. Although some who are grieving seek closure and others report finding it, a significant number of voices cry foul; they argue that closure does not exist and that it only promises false hope. Still, advice for finding closure thrives. [. . .] It is exploited for political gain. It is sold for financial gain. It is used to counsel those who hurt, to help them through their grief. But is that what they need or even want? (Berns, 2011, p. 2)
Not only does grief have a problem with timely departure, and complicates the steady return to normality (Malacrida, 1999), it enters the scene much earlier than expected – coming, in the context of death and dying, at the points of recognition of major change, up-and-coming mortality, and loss of life-as-it-was (not necessarily through death) (Snaman et al., 2021; Thimm & Holland, 2017). In fact, Kübler-Ross referred to this complex temporality of grief regularly, noting, in relation to her own forthcoming death, ‘I have been in anticipatory grief for a long time now, and I expect there is more to come’ (Kübler-Ross & Kessler, 2014, p. 19, emphasis added).
This notion of anticipatory grief (Rando, 1986; Schoenberg et al., 1974; Sweeting & Gilhooly, 1990), and, in some cases, anticipatory mourning (Rando, 2000), has become a routine descriptor of affective intensities leading up to death in palliative and supportive care contexts. As originally conceptualised within the psychoanalytic scholarship, anticipatory grief referred to the work of relinquishing emotional bonds with a loved one in anticipation of their death (Nielsen et al., 2016). Anticipatory grief, as a concept, has been utilised to enhance clinical comprehension of the more drawn-out psychological effects of death, including those that emerge before the ‘event’ itself. It has also been leveraged in the development of psychotherapeutic interventions to ameliorate the suffering associated with dying and/or bereavement (e.g. Cheng et al., 2010) – for example, by ascertaining whether those who experience anticipatory grief ‘recover’ more quickly after loss (Fulton & Gottesman, 1980; Nielsen et al., 2016). This scholarship has been important in drawing attention to grief’s temporal fluidity and ‘reach’ (pre and post death), yet it has been rigorously challenged for (among other critiques) assuming a linearity of emotion and valorising a singular affective orientation (Fulton, 2003). As Fulton (2003, p. 348) observes, a key (though increasingly contested) assumption underpinning much of this work is that ‘once the “grief work” has been initiated, the survivor’s grief is presumed to be dissipated in a continuous and irreversible course toward its resolution’. The reality, as we explore below, is frequently more complex.
Grief enters the scene in many different forms and at many times (Bandini, 2022). In some respects, the concept of affective hauntings, emergent from Derrida’s (1993) hauntology and related psychoanalytic work, has eerie pertinence to the undulations of grief (cf. Davis, 2005). Grief comes and goes as it pleases, seemingly without respect for moral boundaries or demands for closure (cf. Olson, 2014). The scene of death and dying is consequently haunted by the presence of troublesome spirits – unpredictable as they are – which refuse to leave, even as the modern condition seeks mechanisms to exorcise the trouble they create (Gordon, 2008).
In the context of caring for the dying, grief, as we shall see, is very often not (only) about the final moments of life or their immediate aftermath. Rather, it derives from the act of witnessing suffering (cf. Oliver, 2001), and the sadness and loss that comes from the (often gradual) fracturing and breaking of relations (Kübler-Ross & Kessler, 2014). Grief emanates from witnessing decline, deterioration and (in many instances) eventual death, whatever role one has within this process. The concept of witnessing (Oliver, 2001; Richardson & Schankweiler, 2019) is valuable here, as such interpersonal relations are not necessarily ‘productive’ or ‘helpful’ in the conventional sense; rather, they involve simply being in the presence of and with the other – of remaining in relation during times of suffering. Or ‘being with’ as Driessen and colleagues (2021) articulate in relation to the paralysis of grief in the context of the recent pandemic (Yardley & Rolph, 2020). Grief, in this scene, is often centred not on death itself, but on the decay of what has been before, and what really should be now. Witnessing this decay involves more than mere recognition – it entails an ethical relation and the fulfilment of a normative imperative (Oliver, 2001). As time passes, this work of witnessing takes on a temporal life of its own, and presence with the other via remembering (both during life and after death) takes centre stage.
Remembering (Casey, 2009), and the feeling of potential or actual forgetting (Ricoeur, 2004), are the building blocks of grief. They are paradoxically both generative, but in different ways. In psychological parlance they are often viewed as instructive for managing or ameliorating trauma, particularly in relation to ‘past’ trauma (McNally et al., 2004). They are also seen as valuable in the cultivation of ‘post-traumatic growth’, where individuals experience positive changes as they grapple with and are transformed by past traumas (Huang & Gan, 2018). They exist in an intricate dance that involves a push and pull between holding on and letting go, as well as the elaborate forms of refusal (internal and external) that permeate such troubling alternatives. There is cultural form to this dynamic, with collective expressions of remembering enduring over time and generations. From Mexico’s Dia de los Muertos to Japan’s Obon, festivals of the dead play a key role in cultures around the globe. Remembering the dead thus remains a critical aspect of living. These events are not merely celebratory; they are critical forms through which life and death – joy and grief – are brought together and integrated. The absence of remembering can hold its own trouble, as our participants’ accounts reveal.
The continuing bonds literature is an important site of multidisciplinary dialogue which has sought to illuminate these dynamics of remembering and forgetting (Klass et al., 2014). This literature was progressed as a contrast to the detachment-focused models of grief scholars such as Freud and Kübler-Ross advanced (Kübler-Ross & Kessler, 2014; Nickman et al., 1998; Silverman et al., 1992). The continuing bonds scholarship offers an account of grief that emphasises the value of continuing affective entanglements between the living and the dead. This work frames such entanglements – manifest in memories, storytelling, practices of communicating with the dead and so forth – as productive and therapeutic, reversing normative logics of the value (therapeutic or otherwise) of progressive detachment. Yet, while extraordinarily helpful in pushing dialogues of grief toward complexity, this literature does not always capture how spectral connectivity jars with demands for unencumbered productivity in the current milieu, creating continuing and accelerating trouble and tussle and complicating the experience of grief.
The trouble with grief, as we show below, very often lies in its potential to disrupt the steady march of (neoliberal) time (Herzfeld, 2009). Remembering is paradoxical – offering affective intensities, but also often easing suffering. As we see below, the perception that others have forgotten – of being alone in one’s remembering – is frequently experienced by those who grieve as a form of misrecognition, estrangement or even betrayal. This affective experience is particularly acute for the bereaved (Buchsbaum, 2014; Davies, 2019), who frequently refuse the imperative to ‘productive’ happiness (Ahmed, 2010), instead ‘holding on’ to mourning, despite the social risks this entails.
Methods
This article takes a qualitative inductive approach to understanding grief and its temporalities, presenting findings from 95 in-depth interviews with people who were caring for people receiving cancer, palliative or end-of-life care, or were recently bereaved. The interviews were conducted in Australia during two periods of data collection: the first in Queensland during 2012–14, and the second across New South Wales, Queensland, Victoria, Western Australia, South Australia and the Australian Capital Territory during 2019–21. In the first period, interviews were conducted (primarily) face-to-face. In the second period, participants were interviewed via Zoom due to pandemic conditions.
This analysis forms part of the authors’ broader programme of research on the experience of cancer, palliative and end-of-life care (Broom, 2015; Broom et al., 2020; Kenny et al., 2017, 2019). Recruitment for the study occurred via patients with life-limiting conditions participating in this research. Patient participants who were receiving cancer, palliative or end-of-life care were approached by a clinician, researcher and/or consumer group organiser who explained the study to them and invited them to be involved. Those who chose to participate were asked if they would like to nominate a partner, family member, friend or ‘significant other’ who played a role in their care to be invited to participate in an interview. The researchers contacted these nominated caregivers, providing them with an information sheet outlining the aims of the study and scheduling interviews with those who wished to participate. This article presents findings from these carer interviews.
The sample includes a broad range of participants, including partners, siblings, children, parents, grandchildren and friends, as well as considerable diversity across gender (66% female, 34% male) and age (5% 18–29 yrs, 6% 30–39 yrs, 8% 40–49 yrs, 27% 50–59 yrs, 20% 60–69 yrs, 13% 70–79 yrs, 7% 80+ yrs, 14% undisclosed). This breakdown is consistent with carer demographics in Australia, where females are more likely to be carers than males, and where rates of caring increase with age until approximately 65-years-old, when they begin to decline (Australian Bureau of Statistic [ABS], 2018).
Interviews were semi-structured and iterative in nature and explored a range of issues around participants’ lived experience of care, including: experiences and emotions surrounding their loved one’s diagnosis and illness; experience of advanced cancer, palliative and/or end-of-life care; and, in those instances where the patient died prior to their caregiver’s interview (n = 15), their experiences of death and bereavement. Questions were open ended and allowed space for participants to share the complexity of their lives. For example, participants were asked ‘what does caring for [patient] mean to you?’, ‘how has caring for [patient] affected your life?’ and ‘how did family/loved ones learn about [patient’s] illness and what were their reactions?’ Bereaved participants were specifically invited to reflect on their experiences of loss. Indicative questions included ‘Could you talk, if you feel comfortable, about your experience of [patient] dying?’ and ‘looking back, how did caring for [patient] affect your life?’ Participants were permitted to steer the conversation to focus on the topics that were most important to them. Interviews routinely centred on the dynamics and complexities of grief, and its relational and temporal dimensions, as explored below. The interviews ranged from 15 to 90 minutes in duration, were audio-recorded, and were later transcribed to facilitate detailed analysis. Participants have been given pseudonyms in this article, and some identifying details have been omitted or changed, to protect participants’ identities.
The methodology for this project vis-à-vis data analysis drew on the interpretive traditions within qualitative research, specifically on Charmaz’s (1990) approach to social analysis. Our aim was to achieve a detailed understanding of the varying experiences of study participants, and to locate these within a spectrum of broader underlying beliefs, agendas, relationships and life experiences. Data analysis was based on four questions adapted from Charmaz’s (1990) approach, which is informed by grounded theory: What is the basis of a particular experience, action, belief, relationship or structure? What do these assume implicitly or explicitly about particular subjects and relationships? Of what larger process is this action/belief and so forth a part? What are the implications of such actions/beliefs for particular actors/institutional forms? This approach to data collection was developmental in that knowledge generated in early interviews was challenged by, compared with, and built upon through later interviews. This provided an opportunity to establish initial themes and then search for deviant or negative cases, complicating our observations and retaining the complexity of the data. We approached the analysis by conducting an initial thematic analysis, undertaken independently by each of the authors, who coded the data, wrote notes and then discussed ideas together. Within this process, we sought to retain the richness of the respondents’ experiences, documenting atypical cases, conflicts and contradictions within the data (Ezzy, 2013) – both within and between individual participants’ reflections. As Charmaz directs, we continually returned to the data to test and augment our ideas. Once we had identified a theme, we would search through the transcripts for other related comments, employing constant comparison to develop or complicate these themes further. This process helped ensure that events initially viewed as unrelated could be grouped together as their interconnectedness became apparent. It also allowed us to develop a nuanced qualitative picture of grief that captured (rather than smoothing over) its ‘messiness’ and contradictions. The final step involved revisiting the literature and seeking out conceptual tools that could be employed to make sense of the patterns that we had identified within interviewees’ accounts of grief (Ezzy, 2013).
Findings
Moving grief
Grief, as evident in our interviewees’ accounts of death, dying and bereavement, is non-linear. It unfolds iteratively over time, refusing a clear or predictable sequence and evading simple temporalities and notions of progress or proximity. Grief was a constant presence in the lives of our interlocutors, who, as the months passed, were variously and often repeatedly plunged into despair, suspended in forgetfulness, or whisked to the dizzying heights of hope without warning or explanation. When treatment was recognised as futile – ‘nothing to be done’, ‘nothing we can do’ – this sense of grief took on new intensity, such that it was often a familiar presence by the time that death arrived. This temporal complexity meant that grief was often decoupled from death itself. Loss rarely occurred purely or even primarily at the moment of death or the final days, and rarely related exclusively to the body and its deterioration. As our participants cared for loved ones as they faced their mortality, loss was multilayered, cumulative and unpredictable. Grief occurred in a gradual and progressive process where bodies, personalities and relationships were transformed by the ravages of illness
2
and the strains of suffering therein. Grief was often most palpable in the many small moments where carers understood that their loved one was already beginning to leave them:
Grief, in this context, involved the loss of reciprocity, intimacy and connection. Embedded in the inevitable deterioration of bodies, and the dependencies that emerge from frailty and the end of life, grief was about the foreclosure of longstanding embodied intimacies. In our interviews, bodily deterioration and death spoke to a deeper and more iterative fracturing of the foundations of relationships, including the forms of reciprocity and care that assembled and maintained them.
Yet grief did not stop here: it moved across proximal and more distal relations. Grief, as our interlocutors experienced it, had a collective, distributed feel – moving slowly beyond the carer to shape families and communities. Whether in the context of relations with children, partners, friends or even work colleagues, participants regularly spoke of ways their (precarious) commitment to care for the dying induced grief concerning these other important relationships. Their grief pertained, in part, to the progressive costs incurred by others – unsettling parenting, work and friendship roles – as care for the sick or dying individual came at too high a price for these other social relations. This was a key dimension of many carers’ grief, yet it is an aspect of grief that is rarely spoken about:
The assumed focus of grief in end-of-life care is generally the loss of the person who is dying. Yet, as Audrey’s experience reveals, caring at end-of-life entails other losses in relation to the collective, such that grief in these contexts often comes to be centred on the loss of everyday life, friendships and opportunities, both for one’s self and for others like Audrey’s daughter. Indeed, for Audrey, regret and grief in bereavement were in part about not having released care earlier – not having sent her partner into respite care for the sake of other family members and relationships. Audrey’s experience speaks to the multidimensional nature of grief, and the layered nature of loss. It also underlines the importance of considering the multifarious losses experienced by the person who lives on, beyond the loss of the person who is dying. As Ratcliffe (2019, p. 663) notes, part of understanding grief is recognising that ‘the possibilities of one’s world can come to depend on a particular person’. While a common experience, many of our interlocutors struggled to speak about this aspect of grief – perhaps because it centred the living in a cultural imaginary where the carer is imagined as a selfless helper. Our participants grieved heavily for lost dreams (‘we were going to jump in the caravan and do the big trip’, Arnold, Caring for Wife) and the lives and futures that were now foreclosed to them.
Not only were these imagined futures foreclosed, but many participants found they were able to reimagine little about the future prior to the death of the person for whom they cared. A suspended animation of (attempted) compassion and care ensued. There was a paralysis of anticipation, as a mix of waiting and (emotional and logistical) preparation occurred in relation to the forthcoming but uncertain death. Death was rehearsed again and again – the ‘final’ moment imagined and worked over – even as the undulations of deterioration and rallying created a perpetual scene of unnerving motionlessness. Each new consultation, test result and updated prognosis induced new waves of feeling as patients and loved ones processed and recalibrated, but ultimately remained painfully suspended between full life and eventual death:
Grief, as Jane eloquently noted, frequently has a much longer lead up than expected. The paradox of simultaneous relief and disappointment that the end has not (yet) come captures the complex emotionality of care for the dying.
Feeling grief
As outlined above, grief plays an (at best) ambivalent role in the context of advanced industrialised societies, whereby (the return to) ‘life’ is prioritised over the undulations of death and bereavement. As Kofod (2020) observes, grief does not sit comfortably with society’s pursuit of happiness and productivity. A social imperative exists to induce or at least perform resilience (Tierney, 2015) – or, to use the medical parlance – to recover (McWade, 2016). The spouse, the child, the parent, the friend – imagined, as they are, in an ideal-type relationship with the loved one who is ill – is expected (or at least hoped) to share the burdens of the other’s suffering, and, when the time comes, to feel and express their loss. Yet grief must be smoothed over and reined in; it must be expressed in appropriate ways, at appropriate times, in appropriate places (Hochschild, 1979). The realities, of course, are never this simple. Unbound by temporal limits, grief evades containment, spilling out of the ‘little box’ it is permitted to occupy and infusing all aspects of life:
As our participants experienced it, grief was messy, unruly and at times all-consuming. It rarely looked like contained sadness or stayed within the bounds of social expectations. For some, the experience of grief involved anger – to grieve was to reckon with and rally against the perceived injustice of their loved one’s situation. Indeed, this felt sense of unfairness at times caused participants to speculate about other people who might have been more deserving of the suffering their loved one was enduring. An element of resentment thus at times infused accounts of grief as carers grappled with the senselessness of suffering and their own inability to deliver reprieve:
As illnesses progressed and the iterative unfolding of grief continued, a tension developed within many participants between the need to feel and process the realities of (progressive and anticipated) loss, and the desire to defer ‘acceptance’ and hold onto hope. As Wetherell (2012) has observed, emotions are rarely simple or singular, and frequently entail complications and even contradictions. In this sense, grief – and concurrent feelings of loss and hope therein – could be a source of frustration. Some participants longed for a return to ordinary life, even as they begrudged the world for continuing on as if nothing had happened. Cultural preoccupation with apparent trivialities could be a source of anger for some who viewed the maintenance of hope (and, indeed, the active production of a rational basis for hope through medical research) as a moral duty:
In this liminal space where participants’ grief and hopes mingled and unfolded as one, society’s failure to recognise the gravity of their pain and offer a solution was at times experienced as betrayal.
Containing grief
Emotions, including grief and its constituent parts, do not reside (exclusively) within individuals, but travel within and between bodies and communities – binding (some) people together, and creating the ‘surfaces and boundaries’ that separate others (Ahmed, 2004a). This circulation of emotions (Ahmed, 2004a, 2004b) creates trouble and tussle in the affective scene of end-of-life care. Many of our participants were acutely aware of the ‘stickiness’ of emotions and the threats posed by potential emotional contagions. Carers were on guard against the ever-present threat that a virulent emotion might infect themselves or their loved ones, with devastating consequences for their capacity to continue. Equally, they worked to cultivate emotional climates conducive to life, and guarded these spaces from external threats.
Very often, the demands of care for the dying required participants to silence, repress or otherwise ‘manage’ their emotions (Hochschild, 1979), and to ensure others in their proximity did the same. Carers frequently strived to subdue or defer their grief, at least for a time, and actively worked to cultivate alternative emotions that were viewed as holding more therapeutic value. This was a complex juggling act, involving a choreography of optimism and hope, even as participants endeavoured to remain connected to the realities of their situations:
As another carer put it:
Managing the affective scene and ensuring a hopeful outlook (at least in the present) was envisaged as a necessary expression of (selfless) love. So much so, in fact, that caring and grieving often came to be conceived as mutually exclusive. Hope was evidence of a shared commitment to live – an act of resistance in the face of death. From this viewpoint, to allow grief to take over would be to allow or hasten death, and to corrode the quality of life in the present (Kenny et al., 2023).
This management of grief extended to the collective. Participants frequently spoke about the ‘problem’ of other people endeavouring to insert their own emotions into the scene of dying, or inadvertently contaminating their carefully curated scene of hope and optimism. Participants’ efforts to cultivate an emotionally therapeutic environment and encourage ‘normal’ living were vulnerable to infection from unsolicited expressions of sadness:
The complex work of managing emotions thus frequently involved a gatekeeping dimension. Participants described their efforts to remain upbeat and hopeful in the company of their dying loved one, but also spoke about their role managing well-wishers and ensuring outsiders did not disrupt the emotional climate their loved one required for their equilibrium. As Richard noted, ‘getting bombarded by a lot of well-wishers, a lot of people showing their concern’ took an emotional toll. ‘[T]he mental load was building and building and building as I was trying to keep everything as normal as possible, and it just became very, very difficult’ (Male, Caring for Wife). Carers consequently became emotional buffers, absorbing and protecting the patient from these onslaughts of ‘misguided’ care.
Lingering grief
The word ‘lingering’ has affective baggage. Whether lingering in dying or lingering in grief, it has uncomfortable connotations in death and dying circles. In terms of physical death, lingering is fraught; it is at once inevitable (‘some will linger’) and troublesome in terms of what is considered right and moral in caring for the dying (McHaffie et al., 2001). Some have even gone so far as to argue for assisting dying in order to avoid lingering (Chamberlain, 2014). Lingering, no matter how much we try to normalise its presence in scenes of dying (Glaser & Strauss, 2017), asks more questions than it resolves. It jars culturally with the art of living (well/vibrantly/productively). It derails the imaginary of the clean and swift (and loving) exit. Grief, too, has a problem with lingering. Or, perhaps, has a tendency to join the unwillingness to fulfil the swift departure. But is grief lingering? Or, is it affective attachments that continue on, spilling into the present? Is the extended presence of grief in fact an act of intimacy that flies in the face of the cultural pull toward moving on and (in the lexis of recent clinical research) achieving ‘post-traumatic growth’? As Alison, whose partner had just passed away, said:
Steven similarly spoke of his enduring connection to his mother, even after her death. What was notable about his reflection was that grief occupied the (literal) room – not purely or even primarily in relation to the loss, but also in relation to the return-to-normal. The silences of the collective, and the refusal to recognise enduring presence (even if not embodied), contributed to a sense of uncertainty estrangement (toward moving on, living on, being without):
In Steven’s experience – and, indeed, in the lives of many of our interviewees – lingering was most palpably felt as the presence of absence (Hetherington, 2004; Maddrell, 2013). As Fuchs (2018, p. 52) puts it, participants continued to experience the ‘as-if presence’ of their loved ones; that is, to ‘feel, perceive and behave as if their loved ones were still alive’, even as they recognised the physical reality of their absence (Ingerslev, 2018). Very often, this was about holding onto the person who had passed, but also about being with the person in terms of their environment, belongings and bodily remains (Heng, 2022). These practices of enduring proximity were not a refusal to recognise loss, so much as an assertion of the continuation of relationality:
Paradoxically, lingering became the salve, while ‘closure’ became the source of grief. Lingering in this way was not easy or simple. Indeed, sitting with – lingering through – loss was an inherently messy process, fraught with the need to separate or distance from the departed – often to protect others, including children. Nonetheless, the occupation was not to be exorcised: the imperative toward closure frequently made the preoccupation worse, the presence more unruly, and the feelings more intense. Estrangement from the collective (family, friends, acquaintances) ensued when lingering was disallowed. A corollary to the fantasy of the good death (fast, peaceful, timely), the template for healthy grieving demanded grief be suitable, time-limited and productive.
‘Healthy’ grief, thus understood, was in fact deeply alienating – corroding connection and prolonging pain. For many of our interlocutors, containing grief meant amplifying anguish.
Discussion and conclusion
In this article, we have sought to elucidate the complexities of grief as experienced both before and after the death of a loved one. Our interlocutors gave voice to the (sometimes unspoken) expectations that shaped their experiences of grief, as well as the fractious relationship between the social scripts that were available to them and the realities of their own grief experiences.
The presence of grief at the end of life has a taken-for-granted feeling. Of course there is sadness, sorrow and pain. The problem of grief as it emerged in these testimonies, however, is that it is routinely misconceived and sidelined (Lund, 2021; see also Walter, 1998). Grief is frequently viewed solely in terms of its disruptive potentiality in a world that values happiness and productivity (Jacobsen & Petersen, 2020). The normative scene of contemporary grief (cf. O’Mallon, 2009) is consequently dominated by the art of closure, the moderation of loss, and the wellbeing of moving on in ‘recovery’ or ‘growth’.
What overlays and frames grief, in this context, is a set of ideas about functioning, quality and the pursuit of happiness (Ahmed, 2010; Berlant, 2011; Kofod, 2020). Grief is presumed to interrupt the ‘good life’ (McKenzie, 2016). Such notions are undoubtedly accentuated in an environment of enduring cultural discomfort – where death represents the greatest threat to productive citizenry. Yet, as our participants narrate, death has its own vitality – a life of its own – and such imperatives are strained under the duress of affective intensities. This results in trouble, and this represents an important area for extending the sociology of grief.
The sociology of grief we have thus advanced in this article is characterised by tension and tussle as much as clear answers. The first and primary problem that assembles grief, as we illuminate it here, centres on grief’s disruptive temporality (cf. Marušić, 2022), which – as the existing scholarship on continuing bonds has begun to elucidate (Klass et al., 2014; Silverman et al., 1992) – pushes up against the social expectation that grief would be overcome simply through the progression of time. Grief, as it appeared across the accounts of our participants, was not bound to a fixed point in time, but moved across the encounter with illness, the dying process and post-death scenes. Grief came in waves and permeated different spheres: the abruptness of a therapeutic shift to ‘terminal’; the gradual but palpable decline in the taken-for-granted qualities of life, relationships and friendships as death approached; the rising recognition of foreclosed futures in the leadup to death; the enduring presence of the person beyond the grave (Kenny et al., 2019).
The second problem is spectrality (DelVillano, 2012; Meagher, 2011). Not unrelated to lingering and the problem of temporality, spectrality manifests in practices of speaking to the dead, writing to the dead and living-on with the dead (Bartolini et al., 2018; Maddrell, 2013; Wojtkowiak & Venbrux, 2010). The very need to talk about grief in terms of spectrality relates entirely to the divisions that structure life and death to begin with. In many respects, the practice of grieving, as revealed here, is made spectral by the tussles that surround it: by participants’ felt insistence that relationality does and should not end at death, despite the pressure they feel to sever connections and let the dead be. In this sense, partitions between the living and the departed are experienced as incomplete. Burned bodies are brought together, communications continue, connectedness endures. To remember, after all, is to be-with and to grieve-with. As Francis and colleagues (2005, p. 21) note, when a person dies, their ‘social identity will not perish so long as it can be reconstructed through the memories and actions of the living’. Perhaps unsurprisingly, it turns out that the enduring presence of the departed is critical in the process of becoming bereaved.
Third, there is an affective refusal surrounding loss, whether death is approaching, has arrived or has just passed. Time and again we heard the comments ‘they all moved on’ and ‘other people seem to move ahead’. One could argue that this was merely an issue of proximity and the intensity of emotions. But there was more to this, at least in the stories given here. The collective was not haunted, not preoccupied with the spectre of the departed. Rather, they had moved on, re-embarking on their lives, and, as one of participant put it, ‘forgotten’. The pull for closure was therefore strong, even as the recognition of one’s aloneness in grief was undermining and alienating. Perhaps more importantly, the collective’s desire for closure was frequently experienced as an unwillingness to recognise the ongoing character of grief. Grief, then, became cloaked in the stigma of holding on for too long (‘still sad?’, ‘pathological grief’, ‘can’t get over it’ and so on). Such holdings-on sat uneasily with the social expectation of a productive return to living – even the achievement of ‘post-traumatic growth’ – leaving (as one participant told us) the unsettling fear that their failure to move on and display ‘resilience’ might ultimately leave them alone.
Fourth, and linked to both affective refusal and temporality, the social network has its own desire for cathartic moments of public grief. But such desires are conditional, momentary and partial. Captured in the beach scenario recounted earlier, and in well-wishers’ desire for ordinary conversations of sympathy and acknowledgement, such encounters were routinely viewed as projective of other people’s emotions, and were typically experienced as unhelpful to the family as they navigated the complexities of their own grief. Often viewed as self-serving (in that they allowed well-wishers to feel they had been suitably helpful and empathetic), such moments of ordinary/precarious affect frequently resulted in forms of protection and withdrawal, as carers endeavoured to avoid this unwelcome performativity. Even as grievers longed for their pain to be recognised and shared, so too did they resist and resent ‘contrived’ expressions of sympathy that only functioned to enhance their isolation.
The normative structures that variously surround and constrain practices of grief both before and after bereavement are powerful, generative and coercive. Social expectations around grieving and ‘moving on’ often masquerade as helpful injunctions in an otherwise paralysed site of (potentially perpetual) melancholia. Yet the felt imperative to leave the dead behind can hurt as much as it heals. Joining with other scholars who resist pathologising renderings of grief (Klass et al., 2014), we argue for a heightened awareness of the normative structures that discipline grief – including within scholarly renderings of grief as ‘positive’ or ‘negative’, ‘functional’ or ‘dysfunctional’, following the expected trajectory toward productive citizenry or diverging into illness. To return to Barbara’s earlier point, ‘grief is not in the little box, it doesn’t even come close to a little box’.
A key task for sociologists interested in the emotions and sociality of bereavement is thus to offer an alternative narration to the psychotherapeutic renderings that currently dominate (though do not go unchallenged within) the interdisciplinary grief scholarship. This will necessarily involve adopting a critical stance vis-à-vis the systems and structures of advanced capitalism and their disciplinary influence on the experience of death, dying and bereavement. Building on other recent work in this area (Blum, 2015; Jacobsen & Petersen, 2020; Kenny et al., 2019; Lund, 2021), we argue that centring questions of temporarily, spectrality, refusal and catharsis will be vital in this project of liberating grief – and, indeed, grievers – from the normative shackles of ‘productive’ mourning.
Footnotes
Funding
This research was funded by Australian Research Council (ARC) grants LP120200268, DP190100745 and DP230100372.