1 INTRODUCTION

Palliative care (PC) includes end of life care (EOLC) as an integral element, which is typically seen as the last six months of life where the aim is to facilitate a dignified death (Krau, 2016; O’Shea et al., 2008). Palliative care refers to care at any stage of an individual's trajectory towards the end of life. In this phase of care, the goal is to optimise quality of life (physical, psychological and spiritual well-being), rather than the prolongation of life (WHO, 2016). In long-term care facilities (LTCF), the literature demonstrates a ‘culture change’ moving away from a medicalised approach to care (Barken & Lowndes, 2017; Coulter & Oldham, 2016). This has resulted in an increasing focus from healthcare professionals, particularly gerontological nurses, on person-centred care and relational care. Person-centred care is described by McCormack and McCance (2017:3) as ‘healthful relationships between all care providers, service users and others significant to them in their lives’. Relational care prioritises the mutually beneficial interconnections of human beings, regardless of being a care provider, friend or family member (Rockwell, 2012). However, in the context of palliative care and end of life care delivered in LTCF, these care foci remain relatively unexplored (Banerjee & Rewegan, 2016).

Long-term care facilities for older people provide 24/7 care when independent or supported care in the community is compromised due to physical, cognitive or social challenges. The complexity of care is evidenced in the prevalence of multi-morbidities in residents’ health profiles (Froggatt et al., 2017; Moore et al., 2014; Swagerty, 2014). Many LTCFs have been characterised as de facto hospices, in marked contrast to their previous role as rehabilitation centres (Banerjee & Rewegan, 2016; Connolly et al., 2014). Consequently, they represent the intersection between continuing care for older people and a palliative approach to care (Froggatt, 2001).

Knowing the person, following their wishes and providing individualised care is considered key to quality PC and EOLC (Boltz et al., 2019; Froggatt & Payne, 2006; Palan-Lopez, 2009). In LTCFs, registered general nurses (RGN) and healthcare assistants’ (HCA) development of relational connections have the potential to enhance the delivery of palliative care (Banerjee & Rewegan, 2017). An increasing proportion of LTCF residents are experiencing significant levels of PC needs prior to death (Gott et al., 2012) and this is particularly evident in the COVID-19 pandemic (WHO, 2020). Casey et al. (2011) highlight the importance of an open culture towards death and dying in care homes in order to provide good EOLC. However, the belief that LTCF are for living only appears to obscure the likelihood that EOLC is recognised in a timely way. Consequently, little or no PC is provided at earlier stages in the disease trajectory (Cable-Williams & Wilson, 2017). There is also evidence that LTCF staff may lack critical knowledge of PC and, therefore, are unprepared for their role (Cable-Williams & Wilson, 2017; Collingridge Moore et al., 2020; Frey et al., 2016, 2017; Lida et al., 2020; Trotta et al., 2018; Unroe et al., 2015), while there remains a lack of standardisation of such care (Lida et al., 2020; Smets et al., 2018; Trotta et al., 2018).

Given that about half of residents live in LTCF for at least one year, while about 21% spend their final five years in this setting (Health in Aging Foundation, 2020), it is unsurprising that the relationships between residents, staff and family become established over time. However, there appears to be a variety of experiences for RGNs and HCAs (Adra et al., 2019; Roberts & Bowers, 2015; Van Stenis et al., 2017). Roberts and Saliba (2019) and Brown-Wilson et al. (2009) describe relationships between staff, residents and family as comprising instrumental components of care, these relationships enable staff and residents to develop bonds through connections made and these impact on the care given and received. Findings suggest that relationships often develop in the context of care routines and the approach that staff adopt in the delivery of care is an important influence on these relationships. Close relationships foster a bond of trust, mutual attachment as well as impacting quality of life, including psychological well-being (Adra et al., 2019; Roberts & Saliba, 2019). Not only are RGN/HCA-resident relationships an integral part of residential care, they have an impact on general care quality (Bergland & Kirkevold, 2008).

Relationships are important in the recognition of palliative care needs. A recent study which explored the nature of HCA’s care in delivering PC in LTCF identified relationships immersed in person-centred concepts, such as compassion, empathy and being embedded in a cultivation of knowing and meaning within mutual reciprocity (Trotta et al., 2018). Relational aspects of person-centred care in the context of building close relationships were also identified in a recent literature review (Boltz et al., 2019) on PC for people living with dementia in LTCF. Additionally, relationships with residents often imprint a lasting memory for staff, who may experience grief following a resident's death (Boerner et al., 2015; Katz et al., 2000). There is a need to understand how the relationships in these units influence recognition and introduction of a PC approach. This can enhance care quality (Banergee and Rewegan, 2016) and add to nursing knowledge of PC with LTCF. Consequently, the aim of this study was to illustrate how palliative care is understood and delivered in LTCF for older people by RGNs and HCAs.

2 METHODS Action research using a co-operative inquiry approach was used in this study. Action research is a set of practices that responds to people's desire to act creatively in the face of practical and often pressing issues in their lives in organisations and communities.

It is a living, emergent process that cannot be predetermined but changes and develops as those who engage deepen their understanding of the issues to be addressed and develop their capacity as co-inquirers both individually and collectively. (Reason and Bradbury, 2008:4).

2.1 Co-operative Inquiry (CI)

CI is a way of working with other people who have similar concerns and interests to yourself in order to understand your world, make sense of your life and develop new and creative ways of looking at things, learn how to act to change things you may want to change and find out how to do things better. (Heron and Reason, 2008).

The nature of CI is to value the expertise already in the group and to build on the knowledge already shared and through reflection to develop new knowledge that is relevant to the co-inquirers, the researcher is also a co-inquirer in the group.

2.2 Sample and recruitment

Details of the research study were sent to the director of nursing in four LTCF’s in one geographical area of Dublin. Two units agreed to be part of the study.

Staff who were interested were invited to attend information meetings and self-select for participation in a co-operative inquiry group (CIG). The staff attending these meetings were from two groups and represented HCAs and RGNs.

A total of 34 staff in the two units joined the CIGs. This included 16 RGNs and 18 HCAs.

Ethics approval was granted by University College Dublin and the ethics committees governing each participating LTCF.

2.3 Data collection

Death reviews have been used in palliative care research and in residential care to generate important insights into care delivery (Beck et al., 2012; Hockley, 2014; Hockley & Froggatt, 2006). In this study, the death review was used in the context of the CIG, to reflect on deaths that occurred on the units. Neither unit had participated in reviews before. The review was facilitated by the researcher. The discussions often broadened out to issues that related to experiences of caring for dying residents and their families, the CIG decided on the actions to be taken. A total of 23 reviews of deaths occurred. The purpose of the CIG was both educational and reflective. Tables 1 and 2 illustrate the participants in each CIG.

TABLE 1. CIGs: Attendance at death reviews Unit 1 Unit 2 Death Review 1 1 HCA, 2 RGNs Death Review 1 Group 1 3 HCAs, 2 RGNS Death Review 2 2 HCA, 2 RGNs Group 2 4 HCAs, 1 RGN Death Review 3 1 HCAs, 4 RGNs Death Review 2 Group 1 5 HCAs Death Review 4 1 HCAs, 2 RGNS Group 2 1 RGN, 3 HCAs Death review 5 1 HCAs, 2 RGNs Death review 3, 4 and 5 Group 1 5 HCAs, 1 RGN Death review 6, 7 and 8 I HCAs, 4 RGNs Group 2 2 HCAs Death Review 9 5 RGNs Death review 6 Group 1 6 HCAs Death review 10 2 HCAs and 5 RGNs Group 2 4 HCAs 1 RGN Death review 7 and 8 Group 1 4 HCAs 1 RGN Group 2 5 HCAs Death review 9 and 10 Group 1 5 HCAs 1 RGN Group 2 3 HCA 1 RGN Death review 11 and 12 Group 1 4 HCAs Group 2 6 HCAs Death review 13 Group 1 3 HCAs 1 RGN TABLE 2. Actions that arose from reflection in the death review CIG and composition of each group Unit 1 CIG Action Attendees Unit 2 CIG Action Attendees 1 Healthcare Assistant Group 1 4 HCAs 1 Debriefing Group 1 5 HCAs 2 Healthcare Assistant Group 2 8 HCAs 2 Debriefing Group 2 3 HCAs, 1 RGN 3 Developing Roles 4 HCAs, 4 RGNs 3 Recognising Dying, Group 1 3 HCAs, 1 RGN 4 Understandings of Palliative Care, EOLC, and PCC 6 HCAs, 3 RGNs 4 Recognising Dying, Group 2 6 HCAs, 1 RGN Total 4 4

In total, there were 41 CIG meetings as detailed in Table 3.

TABLE 3. CIG meeting type, number and function Table : CIG meeting type, number and function CIG meeting Number Function Introductory 3 To elicit and co-develop preliminary understandings of PC and EOLC Death review 23 To reflect on care given to the residents during their lives on the unit and at the time of their death (n = 23). Death review CIGs allowed a consideration of the influence of a PC approach, identification of components of care staff valued and those they wished to improve in the context of PC and EOLC. Most importantly, co-researchers co-created further understandings of PC in the context of older person residential care Action groups 8 Two groups to allow healthcare assistants to reflect on their experiences of palliative care. Two debriefing groups after a number of deaths occurred simultaneously. Two groups to identify signs that a resident is beginning to die. One group to explore developing roles for participants in caring for residents and one group to discuss the meaning of PC, EOLC and PCC following participation in the CI group Feedback Groups 7 To evaluate how participating in the CIG had influenced their knowledge, practice and understandings of PC in the context of caring for residents. These groups also verified the themes that evolved from the process Total 41 2.4 Analysis of data

CIG discussions were digitally recorded and transcribed. All transcripts were made available to the co-inquirers. Thematic analysis is described as a method for identifying, analysing and reporting patterns (themes) within data (Braun & Clarke, 2006). While the process broadly influenced the management of data, it was inclusive of reviews of the data by the CIG where themes were discussed and reflected upon from one group meeting to the next.

Figure 1 illustrates how the main themes were constructed by the CIG.

Illustrates the origin of the themes that developed through engagement in the CIG

2.5 Quality in action research

Quality in action research rests internally on our ability to see the choices we are making and understand their consequences and externally on whether we articulate our standpoint and the choices we have made transparently to a wider public (Reason, 2006).

Figure 2 illustrates how the components of quality were addressed in this research study.

Illustrating quality in this action research study

2.6 Findings

The three themes that best describe the experience caring for older people in the residential setting are, Living, Loving and Letting go. Figure 3 illustrates the important components of caring for older people in residential care identified by co-inquirers in the CIGs. The diagram illustrates the importance of the resident being at the centre of the delivery of PC and EOLC within the context of person-centred care. It recognises the importance of relationships between resident, staff, family and those significant to the residents. Moreover, the importance of communication and decision-making in the context of these relationships is key in ensuring that residents needs are met as they live and die in residential units.

Living, loving and letting go: caring for older people in residential care

Living, loving and letting go described the very close relationships that developed between staff, residents and residents’ families during their time together and the experience of staff dealing with the loss of a resident. The findings also articulate the co-inquirers’ own understanding of the inherent components of how the relational processes cohere together and represent the synthesis of PC, EOLC and person-centred care.

2.7 Living The first theme of living and defined as giving value to the residents as individuals and potentialising human flourishing was important to staff, while many residents die on the units, dying did not dominate the thoughts of the staff. The importance of the units as a place of living was illustrated by the following HCA:

I think until the end moment, they are still alive …., you can't think ‘they are going to die’, you have to see them as alive until they are gone, you can't think of this as their last few days …. NO, they are still alive …You need to care about them and even we try to make them lovely, with make-up and nice clothes and then they can feel like they are still alive … (HCA 2, CIG#18)

In appreciating the significance of the life of the resident and the unit as their home, other aspects of care that were important were identified, recognising changes in a resident that might imply their condition was changing was important.

The co-researchers felt that being on the unit over months and years had given them the opportunity to learn, through experience, the things that they might notice if a resident's condition was changing. They had developed assessment skills through daily care that helped to ‘intuitively’ know that a resident's condition was changing.

I see it in the eyes you know, T, I remember exactly the moment I saw it, it was Tuesday, I was giving her tea and she was drinking, she was even speaking, but her eyes were empty, they were completely different. (HCA 2, CIG#18)

Communication was very closely related to decision-making. How staff, families and residents understood information had an impact on the outcomes of care. Knowing the wishes of the resident and how best to address them was deemed to be challenging.

And we have been talking about this for 2 years now you know, how to best capture that information, we were saying about these ‘golden moments‘ you can have when you are taking care of somebody, things that somebody might say to you, you know completely out of the blue they say something like, well I wouldn't like to go out to the hospital or I want to be buried wherever, we can get all of these, but again, they have to be here for a while for us to be able to do that so it takes time. (RN 1,CIG# 4)

Consequently, the relational connection appears to foster a capacity to notice changes and to learn ways to learn what a resident may want at the end of life in an informal way.

The co-researchers described the challenges they experienced when decisions about intervention must be made by reflecting on their own sense of what was appropriate and what was not. However, this could cause frustration when there was a lot of uncertainty and difference of opinion.

I truly believe everybody should be NFR (not for resuscitation), everybody should be for full comfort management but I think in the event of a cardiac arrest, I think CPR should not be initiated …Now I know a lot of people here totally disagree with this …and we often have to transfer patients to hospital because a decision about care is not documented. (RGN,1, CIG #22)

10/10 they always say no (to transfer to hospital) which I think is a reflection of how comfortable they feel here but also you know, the doctor will say, there is nothing that Hospital X will do that we can't do here, we give IV, syringe drivers and they would have to go through A and E, there is nothing worse than transferring a resident form here to hospital, I hate it. (RGN 2, CIG#20)

While living is the focus of care in these units, staff were also aware of the importance of having a plan in place should a resident deteriorate, this could avoid unnecessary transfers to hospital and allow the resident to die on the units surrounded by staff who know them best.

2.8 Loving

Loving described the depth of the relationships between staff and residents. These relationships could be complex and subjective and enmeshed in an ethos of person-centred care. However, one co-researcher made the point that you must in fact have the desire to build up relationships otherwise it can just be ‘doing a job’.

A relationship depends on connection between people and is dependent on the desire to make this connection. In the following excerpt, one HCA reflects on this:

Well, if you want to care for people you will care for them …if you have an interest in developing a relationship you will and that's what changes the life for a resident and a relationship between the staff and the resident. If you don't want to do that you don't have to, you can just go through the routine, do your job and that's it. (HCA,4, CIG #24)

Loving was enmeshed in the fostering of relationships with residents, families and other staff. These relationships impact on the care a resident receives.

2.8.1 Relationships with residents When the co-researchers started to explore the importance of relationships, the philosophy of person-centred care emerged as a very important aspect of their care. In all the relationships between the RGNS, HCAs and the resident, keeping the individual needs of the resident was considered a priority and a central component of care. In addition, there was an aspect of human bias in those relationships as details in the excerpt below:

Yes, it really is about relationships …like if you think about this place as a family, in every family you have your favourites as well …you care for them There are some people you REALLY love, I love P, T, or …. you know some people you really, really like …, of course you care about all of them and there is no difference there (HCA 2, CIG#10)

Sometimes co-inquirers felt they had to fight for what they knew the resident might like and spoke of the frustration of dealing with absent family members who suddenly arrive at the end of a resident's life. The irony of making that last visit was not lost on the co-inquirers:

I think for a lot of the residents, we are the family, some of them don’t have any children and that … we are who they see every day, from when they wake up to when they go asleep, yes so it is weird as C says, when they die to see families on the last day here, it like a big show kind of … you know (HCA 3, CIG#11)

2.8.2 Relationships with families Because of the longevity of most stays, the co-inquirers found they were often very involved with family members. Consequently, family members became part of the bigger community within the unit.

Like the wives of the residents, you know we are building relationships with them, it's not only that we know them but they know us and our lives too, you know they ask staff members about their kids. (HCA 3 CIG#10)

However, sometimes there was frustration by the lack of family involvement, and this extended into feeling that they held more authentic relationships with the resident. Conversely, there was, a sense that their care relationship extended to family members who themselves struggled with their relative transformed through ageing and morbidity. There was an understanding of these relatives’ emotional difficulties:

I remember one resident that her daughters hardly ever visited her at all they told me they just couldn't look at their mum in that state, but then when she was dying, really dying, one of the daughters was here all the time, so it's hard on them really (lots of agreement). (HCA 3, CIG #2)

2.8.3 Relationships with each other The relationships between staff and the idea of ‘team’ were an important factor in delivering EOLC to residents and in supporting each other along the living, loving and letting go processes that were integral to care delivery. The dying process created a shared experience of community, closely connected to the letting go theme:

We have the best team, and I don't think it is me, we are not special on our own, it's just how we feel those last few days with our residents, let's say what happened with T, she had no family, just sometimes for an hour, so whoever was free they would stay with her and hold her hand, not just one carer but all of us. Actually, when somebody dies who was close to us, we cry many times, and that emotion links us together, it's like cohesion or something like that, it brings us together. (HCA,2, CIG#37)

Despite the sadness within EOLC for a loved resident, the team demonstrated resilience:

If you can cry together, you can laugh together too, yes, and we still have plenty of old staff and the new join us because you know we have that core so they join us. (HCA, 3 CIG#37)

Relationships appear to be key in ensuring that residents needs are met. The surrogate role of family that some staff experienced caused frustration when family members were not involved and arrived at the very end of life but many experienced fruitful relationships with family that were also a loss to them following the death of a resident.

2.9 Letting go The final theme in the data was that of ‘letting go’. Having presented the themes of living and loving, this theme captures the experience of the members of the co-inquirers as they came to terms with the death of a resident. This includes a sub-theme of grief. This was perceived as a sense of closure to life, where the co-researchers were reconciled to the resident's death:

You know that feeling when you are ready to let her go and you understand it is better for her to pass away, you want it to happen … you know being on the edge. (HCA,1, CIG#24)

As described in the loving theme, letting go translated to being there at end of life, particularly when the resident had no family present:

She very rarely had a visitor and no real family to stay all the time and so when we felt she was at the end stage, that she was going, we took the time, we had an extra staff and so we all took turns sitting with her, we stayed with her instead of family and we got the feeling like, we could give a little more than with other residents because the family was not there so we were there. (RN 1, CIG#12)

2.9.1 Grief Caring for a resident over a long period and at the time of their death was not without challenges. While the co-inquirers may have reconciled to the resident's death, there was residual grief, which could be unacknowledged.

I don’t know what I want in that moment, but maybe I just want to enter the room, maybe just look and touch them, make sure they are beautiful from my point of view. Then, it’s not like there is a stone in your heart but a feeling, that somebody just passed away who wasn’t a big friend but someone that I was used to caring about and I have that feeling that you need to put some kind of stamp on the end of it. (HCA,3, CIG#16)

Having become connected through relationships, the letting go could be difficult. The participants agreed to start a memory book, the journal was called ‘Remembering our residents: Living, Loving and Letting go’ A picture of the deceased resident was included and staff could write memories they had of the resident. This served a particular need of immortalisation.

2.10 Palliative care for older people in residential care

Through discussion and reflection with the co-researchers, the following description of palliative care for residents including the relational aspects of caring was developed. Illustrated in Table 4.

TABLE 4. Palliative care for older people living in residential care ‘A palliative care approach in this setting accepts that residents who enter residential care will live and most likely die in this unit. While residents may die on the unit, this approach emphasises the need for good quality of life and in the event, that there is a recognition that a resident has entered the final stage of life, realises the importance of reassessing care goals in communication with those closest to the resident. It is an approach to care that values the life experience of residents, and the things that are important to them. The approach ensures that every effort is made to include the resident in decision-making. If this is not possible then to help family understand decisions that are made in the context of this care environment that allows the best quality care and ensures the wishes of the resident are taken into account. The resident or next of kin will be supported through good communication and understandings of reality of care and effect of interventions. The approach ensures a resident will be treated with respect and dignity, that their final days will be comfortable, pain free and surrounded by those that love them. That staff in the caring environment are supported to provide such care with the necessary knowledge and support. This approach to care also appreciates the relationships that develop in the unit between staff, residents and their families and allows staff time to grieve.’ (CIG#36,37,38)

In exploring the meaning of palliative care in older person residential care, the terms living loving and letting go were co-created by the CIG to describe the elements of caring for older people at the end of their lives. Knowing the resident and the development of relationships were a key component in not only establishing the wishes of residents but nurturing families and staff.

3 DISCUSSION

The literature demonstrates the need for care in LTCF to orientate to a PC approach and that such competencies are supported through education, psychological empowerment, experience, age and leadership (Boltz et al., 2019; Collingridge Moore et al., 2020; Frey et al. 2019; Lida et al., 2020). Additionally, there is a troubling disconnect between the vision, funding and organisation of LTC as homes for living and the reality that they are increasingly required to serve as hospices for older people (Connolly et al., 2014). While the experience and quality of care have not achieved the same status as other quantifiable key performance indicators (for example, financial savings), the experience of care, including relational aspects, is increasingly being measured (i.e. patient experience surveys, person-centredness focus in policy and service delivery) as fundamental to overall quality (Phelan et al., 2020) of care including in LTCFs.

While there has been much focus within the international literature on the relational aspect of care within RGNS, HCAs, residents and families, studies specific to relationships within the context of PC, including EOLC, in LTCFs remain scant. In this study, RGNs and HCAs engaged in a collaborative and critical learning process to make visible their delivery of PC and EOLC, which involved living, loving and letting go. The data suggest that PC involves a temporal journey for staff who metaphorically walk alongside the resident during PC and EOLC. This relational journey demonstrates core elements of person-centred care which is increasingly recognised as core to PC (Beck et al., 2012; Boltz et al., 2019; Trotta et al., 2018). Kitwood, (1997) identifies a need for attachment by the person (resident); this can be contextualised within positive social psychology (Brooker, 2007; Kitwood, 1997) or process-related domains within Santana et al. (2017) person-centred care conceptual process. While there have been critiques that person-centred care had relational limitations in general and within LTCF (Banerjee and Rewegen, 2016; Nolan, 2004; Rockwell, 2012), this paper argues, that the data in this study identifies relational care as a fundamental component of person-centred care.

Meaningful relationships are also core to Nolan's (2006) senses’ framework especially in the context of creating enriched environments, which promote a sense of security, a sense of belonging, a sense of continuity, a sense of purpose, a sense of achievement and a sense of significance. Equally, McCormack and McCance’s (2017) person-centred approach demonstrates the need for cultures of care to be imbued with attributes pertaining to the commitment to the job, the care environment and care processes. As suggested by Health Information & Quality Authority (2016) in the context of person-centred approach to care, residents should receive PC and EOLC that supports their personhood and respects the dignity of the resident. Previous studies have pointed to optimising staff-resident relationships within LTCF and how this can enhance care quality (Roberts, 2018). Unlike other research which demonstrates staff-resident relationships as also being utilitarian or functional (Roberts, 2018) or pragmatic (Brown-Wilson et al., 2009), this study's dominant finding was within the close relationship realm and in the context of PC. While Roberts (2018) describes residents as experiencing adversarial relationships (negative or involving conflict), this may be conceptualised within the co-inquirers’ perspectives of absent relatives or within conflict regarding decision-making. This is particularly important in the context of communication difficulties, for example residents living with dementia (Boltz et al., 2019). However, the importance of having a community of practice in PC was demonstrated in terms of sharing aspects of EOLC, ensuring a physical presence with the resident and acknowledging mutual grief.

Living, loving and letting go aptly describes the integration of a PC approach (including EOLC) with person-centred care. Yet, at the end of the process, the RGNS and HCAs recognised the invisible work in delivering PC and EOLC, which was not previously explicit in their consciousness. Moreover, they recognised that their feelings of loss and emotional distress after a resident died was legitimised in the process. Engaging in death reviews enabled debriefing and permitted fractured subjectivities as professional practice and personal feelings were acknowledged.

As identified by the co-inquirers, addressing the palliative needs of older people living and dying in residential care is important, but so is the valuing of the relational aspects of care. For RGNs and HCAs, the challenge is to ensure that relationships contribute positively to care delivery and transitions to palliative care are recognised and an appropriate plan of care is in place. At the core of providing good care, as residents live and die in these units, is the person-centred approach that embraces the life story of the resident and, in relationship with others, ensures that the most appropriate decisions are made regarding care and preferences. Accordingly, there was a desire among participants to ensure that needs of residents were met regardless of the time a resident lived in the LTCF. The shorter stays could present challenges in relation to the depth of knowing the resident; however, the focus was on building relational mutuality. For those who lacked capacity (dementia), staff could draw on other sources to obtain information that could be of benefit to knowing the person, for example, life story narratives, likes/dislikes from family/friends. In all of the narratives, finding ways to understand the person, their history, preferences and values were considered essential and working with the resident with an unconditional positive r