Stage 1: Identifying the research question

The scoping review aimed to answer the question: What is known about the social, emotional, relational and spiritual aspects of older people's experiences of death and dying in RACFs?

Stage 2: Identifying relevant studies

We reviewed relevant research literature by searching databases and catalogues, and examining the reference lists of selected publications through forwards and backwards citation tracking. An initial set of search terms derived from the research question was used to conduct a limited, preliminary search of the literature, with the aim of identifying additional keywords and determining the scope of relevant literature. Five electronic databases (ProQuest, Scopus, SAGE, Web of Science and JSTOR) were used to locate the articles analysed in this review. These are among the largest multi-disciplinary databases of peer-reviewed literature, selected to cover empirical research in fields of social work, nursing, sociology and social policy. In addition, Google Scholar and the catalogue of the University of New South Wales were used to optimise the results of the database searches and enhance the reliability of the search approach (Bramer et al., Reference Bramer, Rethlefsen, Kleijnen and Franco2017). The searches were conducted on 26 January 2023 and updated in July 2023 using the following combination of terms: ‘dying’ OR ‘death’ OR ‘end-of-life’ AND ‘aged care’ OR ‘nursing home’ OR ‘residential care’. After reviewing the abstracts and keywords of the articles identified through the search, we subsequently added the additional search terms ‘long-term care’, ‘experiences’, ‘expectations’, ‘perceptions’ and ‘attitudes’, as well as ‘covid’, ‘covid-19’ and ‘pandemic’ to capture the impacts of COVID on older people's experiences.

The search parameters were limited to sources published between the years 2000 and early 2023, during which time research interest in end-of-life care in residential care settings increased rapidly following a number of major policy changes internationally. This period also allowed us to focus on contemporary residential aged care settings, which have been subject to widespread reform in many countries since the 1980s and 1990s (Allen et al., Reference Allen, Chapman, O'Connor and Francis2008). The search produced a total of 17,858 titles; filters were applied to include only social science sources (per Scopus, SAGE, JSTOR and Web of Science filter) and sources in subject areas relevant to the research question (ProQuest). The resulting 1,713 articles were exported from the online databases into Endnote.

Stage 3: Study selection

Inclusion and exclusion criteria were developed and applied to the articles to determine whether they fit the purposes of the scoping review. An initial set of exclusion criteria were used to eliminate studies that did not relate to our central research question. Namely, studies focused on the clinical aspects of death and dying in aged care were excluded (e.g. medical interventions, pain management) so that only those papers related to socio-cultural, emotional and relational aspects remained in the sample. For the purposes of this review, socio-cultural factors refer to how individuals and communities perceive and encounter death and end-of-life care within their social and cultural contexts. This includes considerations such as religious beliefs, familial dynamics, social norms, cultural practices, and attitudes towards death and dying. Emotional aspects refer to the psychological and affective responses associated with death and dying, such as fear, anxiety, helplessness, boredom and coping mechanisms. Relational aspects encompass interpersonal dynamics, relationships and support systems that individuals and communities rely on as they approach the end-of-life, including family, friends and care-givers. Studies of death and dying in settings other than residential aged care were excluded, as were studies that did not directly engage with older people's experiences of death and dying (by including them and/or those close to them in the study sample). Also excluded from the review were publications in languages other than English, and non-scholarly publications such as newspapers and magazines, as well as unpublished manuscripts and conference papers.

Studies included in the scoping review comprised those with an empirical focus on the experiences of older people (aged 65 years and above) approaching the end of life in a nursing home, residential aged care or long-term care facility. Care models and terminology for care homes differ within and among the countries included in this review. Mindful of these differences, our search approach used variations of country-specific terminology (e.g. nursing home, long-term care, etc.), while in the article we use the term residential aged care facility (RACF).

The ethical and practical challenges of undertaking research with older people and/or those facing death in aged care settings clearly limits opportunities for older people's participation in research. We therefore sought to identify and synthesise research that also described the experiences of these older people as perceived by their families and staff working closely with them. That is, studies that focus on aged care workers and families or informal care-givers (relations and friends) with direct involvement in the dying experience of an older resident, and which focus on the experiences of the older resident, were also included provided the study sample included older people. Geographical parameters were also applied, such that only studies conducted within Organisation for Economic Co-operation and Development countries with broadly comparable aged care systems (i.e. those that are partly or entirely publicly subsidised to enable access to paid care for some or all of the population) were included. Only journal articles and other scholarly outputs (i.e. book chapters, books) were chosen for inclusion in the review. Sources that did not conform to these criteria were excluded based on an initial reading of the title and then abstract. The articles were then read in full to determine whether each should be chosen for inclusion in the review. This yielded a corpus of 16 scholarly research articles. An additional six sources were located by reviewing the reference list of selected publications, such as existing literature reviews, and tracing these citations. The complete selection process is depicted in Figure 1. We used the PRISMA scoping review extension checklist for reporting (Tricco et al., Reference Tricco, Lillie, Zarin, O'Brien, Colquhoun, Levac, Moher, Peters, Horsley, Weeks, Hempel, Akl, Chang, McGowan, Stewart, Hartling, Aldcroft, Wilson, Garritty, Lewin, Godfrey, MacDonald, Langlois, Soares-Weiser, Moriarty, Clifford, Tunçalp and Straus2018). According to Arksey and O'Malley (Reference Arksey and O'Malley2005), scoping reviews do not usually include quality assessment tools. Nevertheless, we used the Critical Appraisal Skills Programme (CASP, 2018) qualitative checklist to evaluate the studies. GVT and EK independently assessed each study's methodological quality against the criteria listed in the CASP, and were deemed of suitable quality. In addition, the authors discussed the quality of each study as part of our interpretation and analysis.

Figure 1. Flow chart of the selection process.

We note the limitations of our process: literature may be missed due to selection of databases (other databases may have elicited additional results), exclusion of grey literature, and exclusion of articles published in languages other than English. Given the thematic focus of our analysis, we also cannot make claims regarding gaps in the literature related to study quality.

Stage 4: Charting the data

Each paper in the final list of 22 references was then ‘charted’ according to key issues/themes/approach (Arksey and O'Malley, Reference Arksey and O'Malley2005; Levac et al., Reference Levac, Colquhoun and O'Brien2010). Guided by Arksey and O'Malley's (Reference Arksey and O'Malley2005) descriptive-analytical method, we applied a common analytical framework to each research article and extracted key contextual and methodological information on each study (author/s, title and year of publication, country in which the study was conducted, aims of the study and methodological approach). The data that we charted were entered into a Word-based data charting form, depicted in Table 1.

Table 1. Characteristics of the included studies

Notes: UK: United Kingdom. USA: United States of America. RACFs: residential aged care facilities.

Stage 5: Collating, summarising and reporting the results

The results of the charting exercise were collated; then we undertook a process of reflexive thematic analysis, following Braun and Clarke (Reference Braun and Clarke2006, Reference Braun and Clarke2019, Reference Braun and Clarke2021). This involved the authors each familiarising ourselves with the data by reading each study article. Then GVT and EK generated initial codes and themes, before the authors collectively and iteratively refined the themes through regular discussion and review meetings. Our coding processes, including the generation and refinement of themes, involved the authors interpreting the findings of each study, querying and questioning our assumptions about the data, and then working collaboratively to develop themes as analytic outputs. Following Braun and Clarke (Reference Braun and Clarke2019), we foregrounded reflective and thoughtful engagement with data and with the analytic process, to develop reflexively our reading of the data, and our resultant themes. The findings of this analysis are reported below, in an analytical summary of the key themes identified in the 22 articles. Our analysis highlighted three main themes related to the social, emotional, relational and spiritual dimensions of death and dying in aged care: connections and closeness; place and the end of life; and temporality, care and the anticipation of death.

Sample characteristics and summary

All 22 papers incorporated older people in their study sample, while nine of them also drew on data collected through interviews and focus groups with family members and staff. The final collection comprised seven papers from Sweden, four from the UK, three from the USA, three from Australia, two from Canada, and one from Germany, Norway and Aotearoa/New Zealand, respectively (see Table 1). All the studies adopted a qualitative approach, incorporating in-depth interviews, focus groups, surveys and/or participant observation.

Despite cultural, geographic and care system differences, there were shared perspectives among older people across these countries, particularly regarding the social-relational aspects of ageing and end-of-life care. A majority of the articles (14) identified social connectedness as central to older people's experiences of living and dying well in residential settings (Kayser-Jones, Reference Kayser-Jones2002; Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Ternestedt and Franklin, Reference Ternestedt and Franklin2006; Pleschberger, Reference Pleschberger2007; Dwyer et al., Reference Dwyer, Nordenfelt and Ternestedt2008; Munn et al., Reference Munn, Dobbs, Meier, Williams, Biola and Zimmerman2008; Parker, Reference Parker2011; Djivre et al., Reference Djivre, Levin, Schinke and Porter2012; Goodman et al., Reference Goodman, Amador, Elmore, Machen and Mathie2013; Fleming et al., Reference Fleming, Farquhar, Brayne and Barclay2016; Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017; Tjernberg and Bökberg, Reference Tjernberg and Bökberg2020; Frey and Balmer, Reference Frey and Balmer2022). As they approached the end of their life, older people's feeling of being cared for and cared about was closely linked to the significance of their relationships and interactions with both other residents and staff (Kayser-Jones, Reference Kayser-Jones2002; Dwyer et al., Reference Dwyer, Nordenfelt and Ternestedt2008; Munn et al., Reference Munn, Dobbs, Meier, Williams, Biola and Zimmerman2008; Parker, Reference Parker2011; Djivre et al., Reference Djivre, Levin, Schinke and Porter2012; Goodman et al., Reference Goodman, Amador, Elmore, Machen and Mathie2013; Fleming et al., Reference Fleming, Farquhar, Brayne and Barclay2016; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017). Across the range of countries studied, the research consistently recognised common themes concerning the socio-emotional dimensions of end of life care. These themes included comfort (Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017), dignity (Kayser-Jones, Reference Kayser-Jones2002; Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Pleschberger, Reference Pleschberger2007), clear and open communication (Kayser-Jones, Reference Kayser-Jones2002; Gjerberg et al., Reference Gjerberg, Lillemoen, Førde and Pedersen2015; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017) and close, trusting relationships (Munn et al., Reference Munn, Dobbs, Meier, Williams, Biola and Zimmerman2008; Goodman et al., Reference Goodman, Amador, Elmore, Machen and Mathie2013). The quality of relationships with staff were seen to indicate whether residents’ preferences for the end of life would be respected (Goodman et al., Reference Goodman, Amador, Elmore, Machen and Mathie2013). Other studies highlighted that having connections with family and friends provides individuals with a sense of meaning and belonging, and in the absence of such connections, there may be a decrease in motivation to continue living (Ternestedt and Franklin, Reference Ternestedt and Franklin2006; Dwyer et al., Reference Dwyer, Nordenfelt and Ternestedt2008; Goodman et al., Reference Goodman, Amador, Elmore, Machen and Mathie2013; Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017).

Connections and closeness: relational support

Our review found that while social connectedness is important to dying well in RACFs, it is not always available to residents nearing the end of life. The articles highlighted a range of barriers to the formation and maintenance of meaningful social relationships, which older people encountered in various residential settings. These included a sense of detachment from others despite co-habitation (Djivre et al., Reference Djivre, Levin, Schinke and Porter2012), feelings of abandonment and neglect due to the absence of family and the time poverty of staff (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Dwyer et al., Reference Dwyer, Nordenfelt and Ternestedt2008; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017), and assumptions, made by staff, that residents would prefer to avoid communal spaces in the last days and weeks of life (Parker, Reference Parker2011). Experiences of loneliness linked to the absence of family and friends and other forms of relational support, such as connectedness with staff, left residents with feelings of isolation, socio-cultural dislocation and lack of belonging at the end of life (Kayser-Jones, Reference Kayser-Jones2002; Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Ternestedt and Franklin, Reference Ternestedt and Franklin2006; Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017). For residents in the Swedish study of Dwyer et al. (Reference Dwyer, Nordenfelt and Ternestedt2008), connection with family was a means by which residents could locate themselves relationally in the world beyond the RACF (e.g. as a wife, mother and grandmother), giving meaning and purpose to their life within it. Family provided a context in which the dying person is ‘seen’, ‘needed’ and ‘known’ in an environment that might otherwise be experienced as impersonal and alienating (Ternestedt and Franklin, Reference Ternestedt and Franklin2006; Tjernberg and Bökberg, Reference Tjernberg and Bökberg2020).

Residents who lacked emotional intimacy and meaningful connections in their lives in some cases saw death as bringing relief from feelings of ‘existential homelessness’ (Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017: 7). Isolation was also linked to aspects of ageing such as the loss of vital bodily functions and autonomy. The shame associated with ageing can invoke feelings of dependency, burden and lack of belonging, negatively affecting one's self-image and relations with others, particularly in societies such as the Nordic countries where formal obligations or strong norms for the family to care for older parents are less strongly culturally prescribed, and in liberal democracies that prioritise individualism and independence over collective responsibility and support for older people (Pleschberger, Reference Pleschberger2007; Dwyer et al., Reference Dwyer, Nordenfelt and Ternestedt2008; Fleming et al., Reference Fleming, Farquhar, Brayne and Barclay2016; Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017; Tjernberg and Bökberg, Reference Tjernberg and Bökberg2020). Bodily deterioration and decreasing independence prompted feelings of shame and embarrassment among some residents in the Swedish study of Franklin et al. (Reference Franklin, Ternestedt and Nordenfelt2006), compelling them to withdraw from social relationships and activities. In this sense, isolation was utilised by some older people as a means of preserving dignity and enacting control over one's life as the body declines and the end of life nears. While older people at the end of life need access to privacy and autonomy, isolation from social contact due to embarrassment is deeply damaging to dignity and inhibits these residents’ enjoyment of the value that social relationships bring at the end of life.

Openly discussing one's own death and the deaths of others was found to be particularly crucial for allaying fears, gaining knowledge and preserving emotional intimacy in times of uncertainty and distress, highlighting the significance of connection (Kayser-Jones, Reference Kayser-Jones2002; Djivre et al., Reference Djivre, Levin, Schinke and Porter2012; Gjerberg et al., Reference Gjerberg, Lillemoen, Førde and Pedersen2015; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017; Tjernberg and Bökberg, Reference Tjernberg and Bökberg2020). The importance of strong family connections was expressed in the desire to have sufficient time to say a final goodbye, as well as the wish to be emotionally and mentally prepared for death when it eventually arrives (Tjernberg and Bökberg, Reference Tjernberg and Bökberg2020). In multicultural countries with substantial immigrant populations, such as Australia, Canada, the UK and the USA, the significance of spiritual support at the end of life was perceived variously among individuals with religious beliefs. Among some older people, including the Punjabi Indian residents interviewed in Wardle and Bennett's (Reference Wardle and Bennett2021) Australian study, there was disappointment that such services were exclusively provided from a Christian perspective. For them, the presence of pastoral care providers was considered important in establishing a nurturing spiritual environment during the dying process.

Place and the end of life

Djivre et al. (Reference Djivre, Levin, Schinke and Porter2012), following Froggatt (Reference Froggatt2001), note that the experience of living and dying in the same space is an essential feature of life in aged care homes. The space contains an ‘inherent cultural ambiguity’ of simultaneously being a home, a site of institutional care and a place of death for residents (Whitaker, Reference Whitaker2010: 102). RACFs were recognised in all the reviewed articles as both a place of care and a place of dying and death. Despite geographical and cultural distinctions, there were a number of commonalities related to institutionalised, communal living and the implications therein for how residents experience death and dying (both their own dying process and the deaths of other residents) (Dwyer et al., Reference Dwyer, Nordenfelt and Ternestedt2008; Davis-Berman, Reference Davis-Berman2011; Parker, Reference Parker2011; Djivre et al., Reference Djivre, Levin, Schinke and Porter2012; Goodman et al., Reference Goodman, Amador, Elmore, Machen and Mathie2013). Several of the articles noted that living in a RACF meant living in ongoing proximity to dying and death – death was a frequent occurrence and was to some degree normalised within that space (Munn et al., Reference Munn, Dobbs, Meier, Williams, Biola and Zimmerman2008; Whitaker, Reference Whitaker2010; Djivre et al., Reference Djivre, Levin, Schinke and Porter2012; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017). Residents had shared experiences of other residents’ death, which at times prompted thought and discussion around dying (Davis-Berman, Reference Davis-Berman2011). Talking about and working towards acceptance of death was a collective endeavour in which residents felt ‘a sense of community where everyone was “in it” together’ (Djivre et al., Reference Djivre, Levin, Schinke and Porter2012: 502).

Living in a place of care meant that residents’ lives were often dictated by the norms, values and routines of the institution (Djivre et al., Reference Djivre, Levin, Schinke and Porter2012; Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017). In their study of older people's experiences of life close to death in a Swedish aged care home, Österlind et al. (Reference Österlind, Ternestedt, Hansebo and Hellström2017) found that residents perceived their physical and existential living space as ‘shrinking’ as a result of their subordination to institutional processes and imperatives. Several studies noted that dying in aged care entails a lack of choice about the location and management of death (Pleschberger, Reference Pleschberger2007; Whitaker, Reference Whitaker2010; Mathie et al., Reference Mathie, Goodman, Crang, Froggatt, Iliffe, Manthorpe and Barclay2012; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017). Some residents were not aware of or concerned about end-of-life choices; others were offered choice but this was confined to the range of options available within the institution, when their preference was to die at home or be closer to relatives (Mathie et al., Reference Mathie, Goodman, Crang, Froggatt, Iliffe, Manthorpe and Barclay2012). Residents reported a desire for ‘quality’ care at the end of life, by which they meant care that attends to both the corporeal and their social, emotional and spiritual needs, such as the need for connection, support, comfort, personal regard, compassion, and opportunities for spiritual or religious expression (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Whitaker, Reference Whitaker2010; Djivre et al., Reference Djivre, Levin, Schinke and Porter2012; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017; Wardle and Bennett, Reference Wardle and Bennett2021; Frey and Balmer, Reference Frey and Balmer2022). For the Punjabi Indian participants in Wardle and Bennett's (Reference Wardle and Bennett2021) Australian study, spiritual-religious services were considered vital for people at the end of life, providing opportunities for communal worship and the performance of important death-related rituals. That institutional structures meant these services were often inaccessible to individuals and families at the end of life was a cause of great anguish. Frey and Balmer (Reference Frey and Balmer2022) and Wardle and Bennett (Reference Wardle and Bennett2021) highlight the importance of spiritual care and opportunities for religious expression, noting that people's fear of death is heightened when their specific religious and cultural needs are not well understood or incorporated into their care.

Resourcing and staffing constraints were identified in a number of studies as a major impediment to the delivery of quality, relationally focused end-of-life care (Kayser-Jones, Reference Kayser-Jones2002; Munn et al., Reference Munn, Dobbs, Meier, Williams, Biola and Zimmerman2008; Djivre et al., Reference Djivre, Levin, Schinke and Porter2012). Parker (Reference Parker2011), for example, notes that the management of death in Australian aged care facilities is geared to meeting economic and biomedical outcomes, rather than social and personal ones, despite their apparent incorporation of the discourse of dying/palliative care. Residents in the study by Djivre et al. (Reference Djivre, Levin, Schinke and Porter2012: 509) expressed fear, helplessness and anger at the depersonalisation of care at the end of life, which they viewed as a by-product of the commodification of care resulting from recent health-care reforms in Canada.

Temporality, care and the anticipation of the end of life

Approximately half of the studies identified that the passing of time, reflecting on the past and looking to the future, and the time-delimited experience of living in a RACF, were important aspects of the experiences of older people in residential aged care that shaped their understanding of death and dying (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Ternestedt and Franklin, Reference Ternestedt and Franklin2006; Whitaker, Reference Whitaker2010; Davis-Berman, Reference Davis-Berman2011; Djivre et al., Reference Djivre, Levin, Schinke and Porter2012; Mathie et al., Reference Mathie, Goodman, Crang, Froggatt, Iliffe, Manthorpe and Barclay2012; Gjerberg et al., Reference Gjerberg, Lillemoen, Førde and Pedersen2015; Fleming et al., Reference Fleming, Farquhar, Brayne and Barclay2016; Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017; Sussman et al., Reference Sussman, Kaasalainen, Mintzberg, Sinclair, Young, Ploeg, Bourgeois-Guérin, Thompson, Venturato, Earl, Strachan, You, Bonifas and McKee2017). While time as a concept was often not explicit, the concerns raised by older people facing the end of life in RACFs often contained a temporal orientation. Most commonly, time was evident in the different possibilities, projected by older people, of what might happen in the days, weeks and years leading up to the end of life. Residents identified concern about the potential for progressive deterioration, including the development of illness, disease and pain (Whitaker, Reference Whitaker2010), fear of losing control and being increasingly dependent on others (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Ternestedt and Franklin, Reference Ternestedt and Franklin2006; Davis-Berman, Reference Davis-Berman2011) and anxiety about the adequacy of the end-of-life care they would receive within the RACF (Djivre et al., Reference Djivre, Levin, Schinke and Porter2012). Some described themselves as ‘resigned’ to and ‘prepared’ for death (Mathie et al., Reference Mathie, Goodman, Crang, Froggatt, Iliffe, Manthorpe and Barclay2012: 738), which was to be ‘expected’ in old age (Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017: 4). Others expressed a wish to die out of a sense of sadness, weariness, frustration or purposelessness which made it ‘very difficult just sitting there waiting to die’ (Goodman et al., Reference Goodman, Amador, Elmore, Machen and Mathie2013; Fleming et al., Reference Fleming, Farquhar, Brayne and Barclay2016; Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017: 4). For these residents the future felt ‘limited … now they were in a care home’; a way to cope was to not think about the future and instead live life day by day (Mathie et al., Reference Mathie, Goodman, Crang, Froggatt, Iliffe, Manthorpe and Barclay2012: 738).

Our review found that older people were primarily concerned with anticipating the process of dying and its management within the RACF, rather than the concept or moment of death itself. These concerns often centred on the social, emotional, cultural and spiritual aspects of end-of-life care, the constraints on staff investment in time, and the ways in which this created greater fear in the anticipation of dying. The most widespread concern reported across the articles was the fear of becoming dependent on others and the associated loss of autonomy, dignity and control over one's life and body (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006; Pleschberger, Reference Pleschberger2007; Dwyer et al., Reference Dwyer, Nordenfelt and Ternestedt2008; Whitaker, Reference Whitaker2010; Davis-Berman, Reference Davis-Berman2011; Mathie et al., Reference Mathie, Goodman, Crang, Froggatt, Iliffe, Manthorpe and Barclay2012). A complex interplay of emotions underpinned these anxieties about dying in residential aged care. A resident in Ternestedt and Franklin's (Reference Ternestedt and Franklin2006) Swedish study described her frustration at not being able to ‘influence anything’; having previously lived an independent life, she felt disempowered by the staff not ‘pay[ing] any attention to what I say’ and the clinical notions of care that prevailed in her residential environment. A resident in the study of Dwyer et al. (Reference Dwyer, Nordenfelt and Ternestedt2008: 102) described her life in a Swedish nursing home as a ‘non-life’ because ‘no one has time for us … if only there was warmth and dignity in this care then maybe it could be called care, but there is no warmth or dignity’. In studies across various countries, feelings of helplessness and incapacitation were linked to both bodily alienation and loss of identity (e.g. Whitaker, Reference Whitaker2010: 103). The loss of certain bodily functions led to an inevitable dependency, but it was the management of that dependency that was most important for older people's self-image and identity as they anticipated their future selves (Franklin et al., Reference Franklin, Ternestedt and Nordenfelt2006: 138). These emotional anxieties around care were heightened by the anticipation of death, and in some cases instilled in people a wish to die (Dwyer et al., Reference Dwyer, Nordenfelt and Ternestedt2008; Whitaker, Reference Whitaker2010; Fleming et al., Reference Fleming, Farquhar, Brayne and Barclay2016; Österlind et al., Reference Österlind, Ternestedt, Hansebo and Hellström2017). Others described feeling helpless and angry about the depersonalised care they witnessed others receiving and believed they too would experience at the end of life (Djivre et al., Reference Djivre, Levin, Schinke and Porter2012).