‘Just a Simple Sausage Sandwich’: The Significance of Sensory Care Practices and Hidden Carers in the Hospice

Abstract

The hospice setting has been explored extensively through the perspectives of patients and clinical staff. This article draws on findings from a UK-based ethnographic study of clinical and non-clinical hospice work to illustrate forms of care that attend to the multisensory end-of-life experience. The data highlight the practices within the hospice setting that are overlooked as forms of care and involve inaction, such as being silent with or gently touching a patient. Moreover, the article brings attention to the hidden work of non-clinical staff, such as cooks and housekeepers. In doing so, the article stretches existing understandings of care within such settings to those working on the periphery of caring work in non-clinical roles. It demonstrates the alternative forms of care and modes of caring expression where words are not enough. The analysis demonstrates how relational flows of care between patients, clinical and non-clinical staff shape embodied, sensory and emotional experiences within hospice settings.

Introduction

Dying and suffering are considered relational experiences within sociology (Dragojlovic and Broom, 2018; Kellehear, 2008). Such experiences are embedded in familial and other social relationships (Broom and Cavenagh, 2010; Broom and Kirby, 2013; Chattoo and Ahmad, 2008) as well as wider social and cultural structures (Bourdieu, 1999; Cassell, 1991; Kleinman et al., 1997). Previous studies have brought attention to the embodied and socially situated nature of the end-of-life experiences of patients in hospices (Hockey, 1990; Lawton, 1998, 2000). Suffering is perceived as a ‘loss of self’ (Charmaz, 1983) and disruption to how one perceives oneself. Dragojlovic and Broom (2018: 25) examine the existing literature on suffering at the end of life to argue that the dichotomous boundaries of ‘cared for/caring; caring/suffering’ are much more complex. The experience is often shared between persons in a multidirectional care entanglement (Chattoo and Ahmad, 2008; Dragojlovic and Broom, 2018). This article illustrates how suffering at the end of life is experienced in relation to others and adds the argument that it is shaped through care practices that engage with the sensory. The ethnographic findings are situated in conceptualisations that define ‘sense of self’ as ‘constructed in relationships with others, and in relation to others and to social norms’ (May, 2011: 5, emphases added). By drawing on sensory care practices and engagements we can better understand how personhood shifts, how it is made and unmade, as an embodied and relational experience.

Studies usually focus on care relationships between clinical staff (predominantly doctors and nurses) and patients in acute healthcare settings (Reed and Ellis, 2020). By adopting a focus on staff, rather than patients, and bringing in the perspectives of those in non-clinical roles (such as housekeepers, cooks, receptionists and complementary therapists) this article makes empirical contributions to sociological work exploring care and ethnographic research on end-of-life care. Analysis highlights the hidden forms of care within hospices, carried out by those not usually considered carers. In doing so, the article calls into question how we perceive forms of care and assumptions around who provides care. Little is known about multisensorial approaches to end-of-life care beyond verbal interaction and exchanges. However, ‘non-interventions’ are typical in hospice and palliative care settings (Borgstrom et al., 2020). Existing sociological research assumes difficulties in articulating and describing the suffering or end-of-life experience (Kleinman and Kleinman, 1996; Scarry, 1985; Wilkinson, 2005), and if suffering is characterised by its inexpressibility, reactions to and engagements with the experience might also lack an adequate language. By drawing on a multisensory lens, this article explores how suffering can be alleviated and personhood sustained in the subtle, embodied and sensory interactions between hospice staff and patients.

In what follows, I begin by overviewing background literature, the project’s conceptual lens and method. Analysis is presented under two headings: Hidden Forms of Care: The Unspoken and Physical Touch; and Hidden Care(rs): Housekeepers and Cooks. The analysis draws attention to subtle interactions and mundane care practices to explore how hospice staff helped to shape embodied environments, atmospheres and patients’ experiences of self. I draw on the significance of appreciating and attending to a multiplicity of the senses in environments of care.

Social and Relational Suffering

Existing work on suffering conceptualises the experience as shaped by and embedded in social worlds and cultural circumstances. Bourdieu’s (1999) seminal ethnographic work on social suffering explored the socio-cultural circumstances and structures that shape experiences of poverty, illness and racism. It is often depicted as a loss of how life and self are experienced: both in the present and future (Broom et al., 2020; Frank, 2001). A sense of self is grounded in ties to others, objects and events (Cassell, 1991; Charmaz, 1983; Frank, 2001). Such studies shed light on the disruption, to demonstrate how it is lived and felt as a threat to one’s sense of self and everyday experience.

A common consensus within sociological thought is the ‘unshareability’ (Scarry, 1985: 4) of intense suffering. It is described as difficult to define. Wilkinson (2005: 10) refers to suffering as ‘unspeakable’. At its most intense, Das (1997) and Scarry (1985) state that it is difficult to capture through coherent, verbal communication. Alongside stripping a sense of self, Kleinman and Kleinman (1996: xiiii) writes that there is an ‘incommunicability’ of suffering, isolating sufferers of different resources, ‘especially the resource of language’. Certain studies have sought to bring attention to its everydayness or an alternative creative expression to communicate the experience (de Montalk, 2018; Struhkamp, 2006). Societal responses sometimes echo and reinforce silences around intense suffering, through denial or a similar inability to articulate reactions to distress (Das, 1997; Kleinman and Kleinman, 1996). Here, we can consider anecdotal phrases, such as ‘I don’t know what to say’ or ‘there are no words’, sometimes heard in response to a difficult situation. This study sought to explore engagements with and reactions to pain, distress and suffering in the hospice setting, to understand the forms of expression (both verbal and non-verbal) used by hospice staff.

Although previous work has captured the sociality of suffering as well as some of the societal structures and norms that deepen feelings of emotional pain, we lack an understanding of how suffering unfolds within relationships of care and work. In the hospice setting, patient/staff relationships are grounded in attempts to alleviate ‘total pain’, a concept founded by Saunders (1964: 68) to encapsulate the emotional, physical, spiritual and mental facets of suffering. Hospices and their staff usually enter once other intense medical treatments have slowed, or when patients are told ‘nothing more can be done’ (Borgstrom et al., 2020: 203). In their ethnographic study, Borgstrom et al. (2020: 203) state that clinical staff ‘come in as the nothing’. By adopting an approach that appreciated the moments where staff ‘do not do something’ the value of such ‘non-interventions’ was emphasised. This article contributes to conceptualisations of social suffering, relational understandings of end-of-life care and dying, as well as to the body of literature on emotional work within healthcare. I further challenge the need to focus on what is explicitly enacted within care relationships, bringing attention to expressions found in moments of subtlety, inaction and quiet.

Entering patients’ lives towards the end of life engages staff with emotional distress and suffering. Dragojlovic and Broom (2018: 37, emphases in original) argue that suffering unfolds as an ‘entanglement’, challenging dichotomous categories between ‘carer and cared for’. As such, caregiving professionals share in the suffering of patients. Much of the existing literature on ‘emotional labour’ (Hochschild, 1983) and ‘compassion fatigue’ (Joinson, 1992) tends to assume a unidirectional flow of externally ‘managed’ compassion, emotion and care. Such research within the healthcare arena also tends to emphasise the experiences of clinical staff, such as hospice nurses (Erickson, 2017; James, 1992) and hospital doctors and nurses (Dragojlovic and Broom, 2018; Lewis, 2005; McCreight, 2005). Reed and Ellis (2020) draw on their ethnographic study of neonatal post-mortem work to argue that emotion work transgresses occupational boundaries, and is performed throughout multi-disciplinary teams.

Recent emerging contributions argue for the value of a ‘relational lens’ in understanding death, dying and bereavement (McCarthy et al., 2023; Reed, 2024). Such a lens has previously focused on familial relationships (Broom and Kirby, 2013; Ellis, 2018, 2013; McNamara and Rosenwax, 2010). This article draws on notions of relationality to explore how experience and feeling are socially situated and defined (Elias, 1978; Roseneil and Ketokivi, 2015). As Simmel states, ‘the individuality of the individual, finds a place in the structure of generality’ (1992: 61). Personhood is socially situated: made and unmade through social interaction and engagement. This article adds to this by embedding the analysis in understandings of relationality while adopting a focus on the sensory. The analysis explores how unspoken and tactile engagements can influence experiences of pain, suffering and the experience of personhood.

The Senses in Hospice and Other Healthcare Settings

Sociologists have long recognised the value of utilising the senses in ethnographic research to bring attention to ‘the background and the half muted’ (Back, 2007: 80) and move beyond the spoken or explicitly expressed (Pink, 2009). There is a limited understanding of how the sensory experience of healthcare settings impacts on emotional feeling. Howes and Classen (2014: 58) note that hospitals are ‘unaesthetic’ spaces, the food ‘unsavoury’, odours are ‘antiseptic’ and physical contact is ‘perfunctory’. Engaging with the senses and embodied sense of place provides insight into how we are shaped in relation to others and environments (Ahmed, 2004; Macpherson, 2010). In a study of hospital care, Bates (2019) explores how illness experiences sometimes entail an absence of the senses. Hospital and other ‘sensescapes’ are interconnected with meanings given to illness and recovery. For example, the absence of a window may provoke a loss of hope for the future, demonstrating how ‘the body takes shape through its interaction with other objects, bodies, and landscapes’ (Macpherson, 2010: 4).

There is existing understanding about the uses of physical touch and silence in end-of-life care (Back et al., 2009; Savett, 2011; Tornoe et al., 2014). The concept of staff ‘being with’ patients, as opposed to actively doing or speaking, is recognised as a powerful tool with the potential to alleviate spiritual and emotional distress at the end of life (Tornoe et al., 2014). These studies demonstrate how non-verbal engagements in clinical situations shape patients’ emotional feelings. However, the research tends to be limited to medical staff.

The practices of non-clinical staff are generally embedded in shaping a sensory experience, for example, through cleaning, disinfecting and preparing food. Such practices are often considered ‘so mundane’ that they are taken for granted (Pierson, 1999: 130). As a result, research has neglected their roles in healthcare settings in attending to atmospheres and embodied experiences. However, practices such as feeding and eating form significant aspects of the lived dying experience, and relationality is embedded within such everyday activities (Ellis, 2018). Further to this, sensory atmospheres shape a ‘social order’ in the hospice setting, and staff play important roles in upholding an auditory and sensorial experience (Gunaratnam, 2009: 8–10). Gunaratnam describes the ‘rhythmic’ and ‘routinized’ sounds of the hospice, such as the movement of trolleys, the chattering of staff and whirring of syringe drivers. This contrasts with the ‘vocal emotion’ of patients and family members (Gunaratnam, 2009: 8) sometimes subdued to maintain a quiet environment.

In an original perspective, this article brings together the sociologies of suffering, relationality and the sensory. It offers empirical contributions that illustrate the significance of sensory engagements between hospice staff and patients in shaping atmospheres, embodied environments and patient experience of self and suffering.

The Study

This article is based on an ethnographic study conducted over six months that examined the engagements, interactions and experiences of hospice staff. The study was funded by the Economic and Social Research Council and formed part of a PhD at the University of Sheffield (Richardson, 2021). Observations and semi-structured interviews were conducted in ‘Broad Lane Hospice’. ¹ Observations were conducted in the wards, day unit, reception, cafe and staff room. Prior to starting the fieldwork, access was negotiated with the hospice’s Clinical Governance Lead and Heads of Care. Consent was gained from hospice staff taking part in either the observations and/or the interviews. Considering the dearth of literature on engagements with suffering, I sought to explore how hospice workers engage with, make sense of and react to patient suffering in their work.

To appreciate the everyday experiences of hospice staff, I undertook observations over a period of six months (totalling over 150 hours) and 18 interviews with hospice staff in 2018. An ethnographic approach facilitated a view of the subtle and everyday aspects of hospice work. Most hospice staff were female, and predominantly white British. Both clinical and non-clinical staff were included in the study. There is limited understanding of the emotional and everyday work of non-clinical staff in healthcare settings (for exceptions, see Ward et al., 2016: hairdressers in residential care settings; Ashton and Manthorpe, 2017: domestic staff and porters in hospitals; and Rapport, 2009: hospital porters).

The ethnographic approach was flexible and shifted with environments and arrangements in the space. While in the day unit I would occasionally play games and join activities. In the in-patient unit, I spent much of my time watching and waiting perched on a chair in the corridors. Where appropriate, I adopted a ‘go-along’ method to join the ward rounds of doctors, nurses and housekeepers. As Reed and Ellis (2019: 210) note, care work is ‘rarely tied to one location’. This approach revealed insights into work that tends to be hidden behind doors, curtains or screens (Lawler, 1991; Twigg, 2006). Moments of mundanity, movement and interaction (or the lack thereof) were recorded as notes, to appreciate the particular ‘social world’ (Featherstone and Northcott, 2020: xi). Settings of end-of-life care are filled with sensory and emotional engagements that shape lived experience for those in the setting (Gunaratnam, 2009; Lawton, 1998, 2000). The ethnographic approach provided insight into the ‘unspoken and tacitly understood’ engagements (Featherstone and Northcott, 2020: xi) as well as the ‘routines and rhythms’ (Pink, 2009: 65) of day-to-day working life. The interviews involved reflection on such moments.

I recorded notes in a diary during the observations, in selected moments of quiet: in the hospice cafe, in a toilet ² or in my car before driving home. They were ‘selective’ (Emerson et al., 2001) notes and reflections, drafted in the hospice and often developed further elsewhere. In this way, analysis began while I was in the hospice. The site was, in the words of Atkinson (1992: 455) ‘produced’ through the details recorded and omitted. Key themes from my notes helped to form a guide for the subsequent interviews. Analysis was a thematic process (Braun and Clarke, 2006), where I worked closely with the interview transcripts and fieldnotes, coding these and crafting themes from the data. In this article, I draw on fieldnotes and interview extracts to elicit the subtle and sensory forms of care in a hospice. I structure the following analysis and discussion around the senses of touch, noise (or the lack thereof) and taste, while also drawing on the importance of the visual and olfactory. The sensory care practices (involving touch, sight, sound, taste and smell) were interlinked in similar ways to how we engage with and use different senses in everyday life.

Hidden Forms of Care: The Unspoken and Physical Touch

It became evident early in the fieldwork that clinical and non-clinical work engaged with all of the senses, and care relationships were formed through embodied and sensory interactions. Multisensory care practices sometimes replaced verbal articulation where words were inappropriate or inadequate. As one of the hospice doctors explained, where he feels ‘powerless’ to change a patient’s emotional or physical state it is important for that patient to know ‘[he] can still be another human being’, and ‘physical touch communicates that very well’. Much of hospice work is typically concerned with pain or symptom management and respite care. Hospice staff are said to ‘come in as “the nothing”’ (Borgstrom et al., 2020: 202, emphasis in original). This was often the case at Broad Lane, where the staff described ‘being with’ or offering a sense of ‘presence’. This apparent inactivity formed an important part of caring as – in the essence of hospice care – the staff cared for the whole person, rather than only easing physical symptoms (Saunders, 1964).

Being silent with a patient unfolded because, at times, the staff felt that ‘there are no words, nothing’ (Elizabeth, Clinical Nurse Specialist) to respond to a patient’s pain, and because they felt that patients needed ‘just to be with somebody’ (Martha, Physiotherapist). Silence expressed the inexpressible, and where the staff were prepared to sit with and in the silence, it also acted as comfort. While in the hospice, I observed a ‘Schwartz Round’ (General Medical Council, 2023), which are reflective sessions for staff working across the hospice. The theme for this session was ‘a challenging day at work’, and two occupational therapists were invited to reflect. One of the occupational therapists, Laura, described an emotional situation where she was supporting a patient to climb stairs. Laura explains:

he broke down in that moment when we sat him back down in his chair, and I felt like I couldn’t hug him, but in that moment, I put my hand on his hand like this, and it felt like forever. He said, ‘right then’, and it’s like he knew then, that he wouldn’t be able to do those things that he liked to do and the normal things.

Laura goes on:

it’s really hard to tell people that you can’t do all of those things that they used to enjoy ever again, and what I’ve learnt is, often, you haven’t got the words. To be silent is the only thing you can do. I’ve learnt that silence isn’t bad. Now I just let it happen. (Laura, Occupational Therapist)

Laura had worked at Broad Lane for around a year and previously trained at a hospital. She described working in a hospital context as more ‘physical’ in terms of approach, whereas working at the hospice involved a focus on the patients’ holistic sense of well-being. In the extract, she describes the patient as coming to a realisation that they would no longer be able to do ‘the normal things’ (such as climbing stairs unaided). She illustrates the patient’s loss of a previous sense of self – embedded in an inability to do the things that were once normal to them – and a shift in their expectations regarding future abilities. Terminal diagnoses create a sense of ‘temporal dislocation’ (Broom et al., 2020: 1011) where one is ‘haunted’ by their previous sense of self, as evident here. Laura offers comfort through silence and gentle touch to help the patient reach an acceptance about their expectations of a present and future embodied self. She also describes her own difficulty in ‘telling’ the patient they would no longer be able to do ‘all of those things that they used to enjoy’.

Words escape Laura, and in their absence, she embraces alternative forms of sensorial interaction: touch and silence. She describes the absence of verbal articulation as supportive in the patient’s sense of intangible distress, conveying her recognition of the depth of their suffering. These absences of articulation were also laden with caring expression, as ‘deliberate and careful acts of passivity’ (Borgstrom et al., 2020: 207).

As suffering is considered difficult to articulate, engagements with the experience were also difficult to express (‘often, you haven’t got the words’). Wood (2022: 416) draws on the work of Cicely Saunders to argue that narratives towards the end of life ‘halt or disintegrate’. Saunders’ descriptions of patients’ ‘total pain’ were often short or incomplete: reflecting the ‘difficulty of articulating’ the experience from the standpoint of a carer (Wood, 2022: 416). In Laura’s reflections of the encounter, the limitations of spoken words were digressed by alternative forms of sensory expression. There is a richness of subtle expression and relational engagement to appreciate in doing and saying little in these moments (Lawler, 1991). In being silent, Laura shares in the patient’s loss of articulation, acknowledging that pain, and its reactions, sometimes stretch beyond words. In the same way that we lack a verbal language to fully describe such suffering, we lack a language to engage with the experience, which does not trivialise or under acknowledge the experience. A different sensory interaction takes the place of spoken word, and they are interchangeable.

Physical touch was a central aspect of the hospice’s care environment, and I refer to its significance as a form of interaction throughout this article. Price and Shildrick (2006: 69) consider touch an ‘interactive sensation’. As important as our sense of sight in mapping and sensing distances around us, it can become more frequent with declining health, and they argue that it can become task-based: to ‘lift’, ‘move’ or ‘transfer’ (Price and Shildrick, 2006: 71). In Broad Lane, clinical engagements were intertwined with physical and intimate closeness. For example, a nurse’s hand that lingered for a few moments on a patient’s arm, soothing them after administering intravenous medicine, and a physiotherapist who explained how her work enmeshes both physical therapy and ‘holding somebody’s hand’ or ‘giving somebody a hug’. Physical touch was a source of emotional expression, creating intimate atmospheres between staff and patients. In the following extract from our interview, one of the complementary therapists, Katie, discusses the embodied and emotional impacts of therapies such as massage and ‘reiki’: ³

Sometimes, when people come in for a treatment, just the touch in itself, or the smell of the oils can just be enough for an emotional release. It may be that I’ve touched a patient’s hands and arms and we’re just starting a treatment, and they’ve got tears rolling and I’ll say to them, ‘are you okay?’, you know, really checking up on them. One patient in particular said, ‘I’m absolutely fine, it’s just nobody’s touched me in a way like this in such a long time.’ It can be that they feel as though they’ve been poked and prodded, medically, and they’ve not had a positive touch experience. (Katie, Complementary Therapist)

Katie’s ‘positive touch’ contrasted with the clinical ‘pokes and prods’ in other healthcare encounters. In the same way that a sense of self is relationally shaped through our interactions with others, ‘bodies take the shape of the contact they have with objects and others’ (Ahmed, 2004: 1). We are ‘moved’ (Ahmed, 2004: 11) by such contact. Katie describes a shift in how patients engaged with their physical body from a site of mechanical and medical touch, and clinical ‘labour’ (Twigg et al., 2011), to a site of ‘positivity’ and pleasure. This demonstrates an entanglement between emotional and embodied pain: as a sense of self takes shape relationally through physical engagement. In her encounters, she describes remaking patients’ sense of personhood as their body shifts with the shape of the contact they experience in care encounters. As such, a sense of socially embedded pain is eased. Suffering unfolds as an ‘affective assemblage’ (Dragojlovic and Broom, 2018: 3), tied to the physical body yet shaped by social engagement, between those in positions to provide and receive care.

The primacy of touch also highlighted the familiarity shared between the staff and patients. One of the nurses, Elizabeth, explained in our interview how patients would often ‘reach out’ to be physically close with her:

I get a lot of warmth from the patients I look after, that’s one of the reasons that keeps me going. You get a lot back, hell of a lot back. Yeah, absolutely. I mean this lady you know . . . she just wanted to reach out and touch me and lots of people do, get hold of me, kiss me, hug me, you know. I’m really comfortable at doing that. (Elizabeth, Clinical Nurse Specialist)

Elizabeth’s account of patients often ‘reaching out’ to ‘hold’, ‘kiss’ and ‘hug’ her illustrates reciprocal flows of intimacy between patients and staff. Reciprocal physical affection was observed in other encounters between patients and staff members throughout the fieldwork. We know through existing research the significance of the use of physical touch in clinical encounters (Back et al., 2009; Savett, 2011; Tornoe et al., 2014). However, the study underlines the reciprocity of closeness and engagement with the body beyond clinical-based tasks. Physical engagement with patients was a comfort to Elizabeth, in similar ways as for the patients receiving care. This disrupts the notion of a unidirectional flow of care, as highlighted by the existing literature on emotional labour in healthcare contexts. Namely, it brings attention to the reciprocity of intimacy within relationships between those caring for/cared for (Dragojlovic and Broom, 2018).

Further to this, it highlights the satisfaction felt by hospice staff through their engagements with patients, challenging assumptions around emotion and care as one-way currents of affect (Bolton, 2005; Lewis, 2005; McCreight, 2005). These displays of affection sometimes ‘blurred’ (Eileen, Day Unit Sister) professional boundaries. As Eileen, the Day Unit Sister, stated ‘we have to be very careful not to cross a line’. As such, there was a boundary to the form of affection and intimacy that could be expressed. The nature of ‘non-interventions’ (Borgstrom et al., 2020) in hospice work facilitates relationships that do not solely revolve around medical care and tasks, and instead privilege social interactions and familiarity.

Hidden Care(rs): Housekeepers and Cooks

Engagements were not limited to clinical staff, and non-clinical members of staff also formed relationships with patients and families. Such work inevitably engaged with the sensory atmosphere and sense of place within Broad Lane, through keeping it clean, or by serving up hot meals. Acts of care were carried out by those whose roles were not centred around care. Subtly expressed and fleeting moments, such as the touch of a housekeeper as they mopped the floors and the preparation of a jacket potato (‘just how they like it!’: Zoe, Cook) were enactments of care. The cooks and housekeeping staff received no formal training in communicating with patients or family members. However, this research demonstrates the intimate moments they shared and their roles in shaping the embodied experiences of patients. The following analysis highlights the roles they played in the provision of holistic hospice care and sustaining patients’ sense of personhood.

As they cleaned and kept spaces tidy, the housekeeping staff also shared intimate conversations and loud jokes along the corridors. The following interaction was observed during the housekeepers’ daily morning rounds of the in-patient unit:

The two housekeepers, Janine and Amy, enter the patient’s room, mop and disinfectants in hand. Janine dims the bright lights, she says ‘it feels more relaxing, they don’t need them bright lights on them’. She sees the patient twitch and gently tucks their arms back under the bed sheet. Janine stays for a moment, with one hand on the bed, and she smiles at the patient. ‘Aww’, she says, ‘the other day she was sat right up in that chair’. They clean quietly and quickly. As we leave, Amy reflects, ‘every day is different. Yesterday was horrible, [the room name] died. It was really hard. I was crying with the family . . . we do so much more than just clean.’

They paid attention to the ‘bright lights’ on the patient, tucking their arm under a bedsheet to keep them warm, and they reflected on ‘crying’ with a bereaved family. They attended to the environment, lessening the harsh clinical atmosphere of coldness and bright white lights. They shaped the patient’s experience of the space through attending to their visual and embodied environment (Bates, 2019). They primarily entered the patient’s room to clean. However, they were emotionally engaged and clearly familiar with patients, holding memories of when they were able to sit ‘right up’ in a chair. The data reinforce the subtleties of care, better illuminated by adopting such a sensory ethnographic approach and considering the work of health and care settings beyond professional or spatial boundaries.

The exact ordinariness and non-clinically focused nature of the housekeepers’ role facilitated an emotional engagement with the individuals they met on their cleaning rounds. As Amy summarises, ‘we do so much more than just clean’. The nature of the care they provided usually took place behind closed doors, in patients’ rooms, and therefore often went unseen. It took place alongside their contracted cleaning work and was often just as significant. They routinely made their way around Broad Lane with their cleaning trolley, as familiar faces, popping in and out of the rooms, shaping a sensory and emotional environment (Gunaratnam, 2009). That which tends to go unnoticed is the work that hospice housekeepers do in subtly caring for patients, offering support in the face of distress and pausing for moments of quiet amid the busyness of their routines. Such emotive interactions with patients and their families involved the whole range of staff.

The potential of ‘food work’ as care, and the role of cooks as carers, also tends to be overlooked. In sociological discussions food is usually ‘taken for granted’ (Pierson, 1999: 130). However, meal preparation and eating form core parts of the everyday, sometimes gaining significance towards the end of life, where the ability to eat certain foods can be disrupted and pleasure from eating can be diminished. Ellis (2018) argues that food is a site of ‘entangled materiality’ wherein important and ordinary interactions and relationships unfold around the context of eating and feeding at the end of life. The hospice cooks attended to how food was consumed by patients on the ward and those attending the day unit, in positions to appreciate and recognise idiosyncrasies as well as personal tastes. In the following extract, one of the cooks, Zoe, emphasises her approach to individualising the food she prepares:

I did have a patient in here a couple of weeks ago . . . and she used to say to me [laughs] ‘when are you on?’. I’d say, ‘oh, you’ll be all right, erm, they’ll look after you’. ‘Oh, I know but I like it when you’re on cos you know how my jacket potato wants doing’ . . . I try to adhere to that, but it don’t always go down very well . . . There’s a patient that’s been in for a few weeks now, and I’ve got really friendly with her parents, and I know that she likes things in a dish, I know to cut it up for her – but I don’t know – when I’m not here – if that’s happening. (Zoe, Cook)

Food, and the act of preparing dishes, were material practices of facilitated or ruptured autonomy in Broad Lane. Zoe explains how she develops knowledge about the patients’ tastes, placing an importance on the choices that may be taken for granted outside of Broad Lane, such as how a jacket potato is cooked. She caters to differences between patients in small, yet careful, ways. However, such an approach was not universally shared among the kitchen or clinical staff, despite appreciation being expressed by patients and families towards Zoe’s approach. These findings resonate with those of Driessen and Martin (2019), who demonstrate how such acts shape identities through attuning to personal choice.

In the serving of ‘institutional food’ (Driessen and Martin, 2019: 248) – that without choice – a relational sense of personhood is unmade. Zoe went on to describe another example, where a patient asked for ‘just a simple sausage sandwich’, that was not on the menu. She later received a letter from the patient’s close relative, thanking her and explaining that their loved one had ‘kept going on about this sausage sandwich right up to [them] going unconscious’. The ability to make everyday choices is significant ‘in enacting individuality’ (Driessen and Martin, 2019: 257) especially where one’s ability to exert control and choice over everyday life has been disrupted. Evidently, the different senses are crucial in shaping and sustaining a sense of self and personhood. Non-clinical hospice staff play important roles in helping patients to continue to derive sensorial pleasure (through touch and taste as well as olfactory and visual sensations), where their ability to do so, and to choose, is challenged. Furthermore, they are in positions to disrupt the clinical and medical atmospheres that can, at times, heighten discomfort, restriction and a loss of self.

In caring for patients as individual persons with tastes, likes and dislikes, we can see the relationality of individuality, wherein the personal is defined according to others and social norms (Elias, 1978; May, 2011). A sense of socially situated and interdependent personhood can be preserved or threatened at the end of life, through clinical encounters, as well as through informal interactions and the practices of non-clinical staff. Serving and preparing food en masse neglects differences between persons, abstracting from their sense of individuality, and overlooks the significance of sensorial desires and (possible, last) choices at the end of life. The nursing staff were sometimes concerned with clinical issues associated with food, as demonstrated in the following extract from fieldnotes at lunchtime in the day unit:

The day unit Sister, Eileen, tells me that one of the patients is at ‘risk of choking because he’s got a blockage. He’s been told what to eat, but he still sits there eating big meals, then ends up choking.’ She sighs in annoyance and rolls her eyes as the patient is served a meal of sausages and chunky chips drenched in gravy. ‘I’m gonna’ have to get over there and do a Heimlich manoeuvre in a minute . . . [she laughs] we’ve offered to liquidise his meals. That’s what he needs to be eating, and he did it once. But that’s it.’

Eileen depicts tensions between caring for patients’ clinical needs and caring focused on an enjoyment and satisfaction of eating food in its proper form. Eileen adopts a ‘clinical gaze’ (Evans et al., 2009: 720) and her presence in the hospice cafe shapes mealtimes into a clinical situation. However, in this example, the patient demonstrates defiance and resistance to medical advice and the watchful clinical gaze of Eileen. As Cook et al. (1999: 227) suggest, eating is ‘an active part of identity practice, through which identity is constructed’. Liquidising the patient’s sausages and chips alters how it ‘looks, feels, tastes, and smells’, removing the ‘sensual pleasures’ of eating (Gunaratnam, 2009: 300). Importantly, it diminishes a source of control over the patient’s ‘sensescapes’, which Bates (2019: 13) argues are an important site of choice and control in healthcare contexts. The ability to choose clashes with the nurse’s attempts to provide care (Mol 2008). The sensorial pleasures derived from eating are acknowledged by the hospice cooks in their preparation of food, and this, at times, challenged the medical gaze of staff attempting to enforce appropriate clinical decisions. Through their sensory and embodied engagements, the clinical and non-clinical staff in Broad Lane were in positions to shape the patients’ sense of individuality and personhood, and as a result, their end-of-life experience.

Conclusions

This article highlights the significance of sensory practices of care and the hidden members of staff that shape patients’ embodied end-of-life experiences. The silences of suffering and its limits of verbal expression give way to multisensory forms of interaction, such as physical touch, the use of silence and the provision of food. Moreover, attending to the visual and embodied environment helps to bring about a sense of comfort amid the clinical setting. This article underlines the importance of understanding care as a sensory and relational practice, and looking beyond occupational boundaries to appreciate the significance of those in non-clinical roles. Therefore, this article uncovers the hiddenness of care within the hospice in two ways. First, by appreciating its multisensory nature, and second by illustrating the care practised by those working outside of caring roles (as cooks and housekeepers). In doing so, the ethnographic data elicit the relationality of the end-of-life experience and suffering, as autonomy, sense of self and personhood can be either sustained or diminished through sensorial interactions between patients and all of those present in hospice settings.

The existing theoretical framework around suffering illustrates its ‘incommunicability’ (Kleinman and Kleinman, 1996: xiiii). The ethnographic approach and the empirical findings demonstrate the importance of utilising alternative, multisensory forms of interaction to better understand and engage with suffering as well as the ways it can be alleviated or heightened. There is a need to think with a ‘democracy of the senses’ (Back, 2007: 8) to explore how the silences of suffering give way to other modes of engaging with and reacting to dying or suffering. This study brings together multiple strands of inquiry in the sociologies of care, suffering and the sensory, to demonstrate how sensory engagements can make and unmake; shape and reshape; sustain and threaten personhood and suffering. Suffering is a relational experience. An ‘assemblage’ (Dragojlovic and Broom, 2018: 3) between persons. Importantly, it is embedded in the embodied and sensory experience. Speaking to existing conceptual work on suffering, which describes its inexpressibility and lack of a shared language (Das, 1997; Kleinman and Kleinman, 1996; Scarry, 1985; Wilkinson, 2005), this research tells us of the importance of appreciating care engagements unfolding within the silences, subtleties and moments of apparent inactivity (Borgstrom et al., 2020). Words were often inadequate in capturing reactions to and engagements with the patients’ suffering. These silences echo the inexpressibility to verbally express the experience of pain and suffering. Adopting a multisensory lens enables us to better understand how suffering unfolds relationally within care interactions, and how personhood is shaped by ‘contact’ between people. The body of the hospice patient is not only shown to be an ‘object’ of the workers’ labour (Twigg et al., 2011: 173). The exchanges described here are intimate, reciprocal and familiar. We can see the ‘constant movement’ (Elias, 1978: 118) in which emotional and embodied feelings are shaped and reshaped within these relationships.

Further to this, the article demonstrates the significance of those working on the margins in care settings and how non-clinical staff help shape patients’ sense of personhood within the hospice space. This could be sustained through actions and interactions typically considered mundane. Such as the intimate and gentle touch of the complementary therapist; the housekeeper who comforts family members and keep patients warm; and the cook who prepares longed for last meals (in the form of a ‘simple sausage sandwich’). These attend to the personal and emotional nature of the end-of-life experience, where one’s ability to personally enact choice around everyday practices is diminished, the non-clinical staff cared for and attended to patients’ needs and preferences. They attended to the visual and embodied environment of Broad Lane to bring about subtle aspects of comfort and pleasure. The dimming of lights and tucking in of a patients’ arms as the housekeepers went about their cleaning rounds are examples of such. Beyond exploring the hidden forms of care, this article also illustrates the need to better understand the care work involved in non-clinical roles within healthcare settings.

This article offers important insights into capturing the whole range of hospice staff, and considering the facets of hospice work that are not typically considered forms of care as well as the staff that are not typically considered care providers. When seeking to understand suffering and the end-of-life experience as relational, we should go beyond that which is spoken, and appreciate the sensory engagements that are left unsaid. As such, a key contribution of this article can be observed in bringing together the usually distinct sociologies of suffering, relationality and the sensory. Where scholars have previously struggled to conceptualise suffering, we should look further than verbal expression, and turn to the other senses to better understand it as a relational and embodied experience.