Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

“Death Is Part of the Job” in Long-Term Care Homes: Supporting Direct Care Staff With Their Grief and Bereavement

“Death Is Part of the Job” in Long-Term Care Homes: Supporting Direct Care Staff With Their Grief... For long-term care (LTC) home staff who work directly with residents, death, dying, and grief are day-to-day experiences in their working life. However, staff are often overlooked for grief and bereavement support. This exploratory research used a qualitative approach to understand LTC staff’s grief and bereavement experience and to identify the perceived support needs of nurses and personal support workers who work in two faith-based non-profit care homes in Thunder Bay, Ontario, Canada. Findings indicated that participants’ experiences are complex, shaped by the emotional impact of each loss, the cumulative burden of ongoing grief, an organizational culture in LTC where death is hidden, and the lack of organizational attention to staffs’ support and education needs. Eight recommendations were developed from the findings. It is hoped that this research will assist in the development of organizational policy and procedures, addressing the health and well-being of direct care workers in LTC homes. Keywords long-term care, nurses, personal support workers, grief, workplace wellness Stricker, 2010; Sanders & Swails, 2009; Stolley, 2010). Introduction Support for grief, loss, and bereavement is acknowledged to For registered nurses (RNs) and personal support workers be an important component of holistic palliative care as per (PSWs; also known as health care aides or nursing assistants) Canadian Hospice Palliative Care Association’s (2013) who work directly with residents in long-term care (LTC) Model of Care. Research in specialized palliative care and homes, death, dying, and grief are usual experiences in their hospice programs is abundant and clearly demonstrates the day-to-day working life (Anderson & Gaugler, 2007; need for and benefit of addressing staff’s emotional needs to Wowchuck, McClement & Bond 2007). LTC homes increas- improve the quality of care and staff retention (Vachon, ingly provide end-of-life care, with approximately 20% of 1995). What is not well understood are the emotional experi- residents in Canada dying each year (Canadian Institute for ences of direct care workers working in LTC homes, espe- Health Information, 2012; Statistics Canada, 2011; Travis et cially how the organization can better support staff in al., 2002). Similar trends exist in England, United States, and managing their experience of grief and loss when a resident Australia (Froggatt et al., 2013; Parker, 2013). dies (Anderson, 2008; Anderson & Ewen, 2011; Rickerson et It is estimated that by 2020, this number will reach up to al., 2005). The presented research begins to address this gap 39% in Canada (Fisher, Ross, & MacLean, 2000). Thus, it in knowledge. should be anticipated that staff working in LTC settings will increasingly care for dying residents on a daily basis. Background However, these staff who provide direct care and assistance to residents and their families are often overlooked when it This study was conducted as a sub-study within a 5-year comes to recognizing their own grief and bereavement expe- project Improving Quality of Life for People Dying in riences. At the health system level, LTC homes have only Long-Term Care Homes (2009-2014), conducted by 27 recently been recognized as a major location of death, and therefore an important setting for providing palliative and Lakehead University, Thunder Bay, Ontario, Canada end-of-life care (Hirdes, Mitchell, Maxwell, & White, 2011). Corresponding Author: Palliative/end-of-life care literature identifies that special- Jill Marcella, Project Manager, Centre for Education and Research on ized training, skills, and education requirements are needed Aging and Health, Lakehead University, 955 Oliver Road, Thunder Bay, for the delivery of palliative care (Froggatt, 2001; Hall, Ontario, Canada P7B 5E1. Kolliakou, Petkova, Froggatt, & Higginson, 2011; Kagan & E-mail: jmarcell@lakeheadu.ca This article is distributed under the terms of the Creative Commons Attribution 3.0 License Creative Commons CC BY: (http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (http://www.uk.sagepub.com/aboutus/openaccess.htm). 2 SAGE Open researchers and 38 community organizational partners, col- It is within this environment that the grief, loss, and lectively known as the Quality Palliative Care in Long-Term bereavement experience of LTC staff is both framed and Care Alliance (QPC-LTC Alliance). The overarching managed. Presently in Ontario, there are no policies or estab- research was a participatory action research project that used lished practices that require LTC homes to address grief and a comparative case study design, with four LTC homes bereavement support for their staff. The Long-Term Care located in Ontario, Canada, as study sites (Kelley & McKee, Homes Act, developed by the Ontario Ministry of Health and 2013). The overall goal was to improve the quality of life for Long-Term Care (2007), establishes the need for policy to people who are dying in LTC homes through the develop- support all formalized programs, but the actual framework ment of palliative care programs, using a process of commu- and content of a formalized palliative care program including nity capacity development (Brazil, Kaasalainen, McAiney, the psychosocial and training needs of caregivers has not Brink, & Kelley, 2012; Kaasalainen, Brazil, & Kelley, 2012; been defined. Therefore, developing and implementing the Ramsbottom & Kelley, 2014; Wickson-Griffiths et al., 2014; palliative care program is left up to each home, and as a see www.palliativealliance.ca for further information). result, the LTC homes demonstrate inconsistent approaches Results of the organizational assessments, conducted in (Brazil et al., 2004). 2009 in the four LTC home study sites, indicated that direct The LTC setting provides little formal support for staff in care workers develop close relationships with residents and managing their grief and loss when a resident dies. Some experience a tremendous sense of loss and grief when these homes may have formal memorial services for deceased resi- residents die. However, there is minimal recognition and for- dents that can promote healthy grieving; however, staff are mal organizational response to support staff’s feelings of rarely provided with space, time, and professional assistance grief and loss. Based on these assessment results, the research to attend these memorials. Likewise, staff does not system- team decided to conduct a more focused and in-depth sub- atically receive training on grief and bereavement, despite study to better understand the inevitable grief and loss expe- the regular occurrence of death (Anderson, 2008; Anderson rience of direct care workers in a LTC home, including their & Gaugler, 2007; Burack & Chichin, 2001). As more resi- perception of how the organization can support them with dents live and die in LTC homes, it is important for staff to these losses. Recommendations emerged from these have access to support that enhances their ability to continue perceptions. providing compassionate and quality care (Rickerson et al., 2005). Finally, there are pressing organizational reasons to sup- Organizational Context of LTC port staff grief and bereavement. Acknowledging grief reac- Historically, LTC homes in Ontario have operated on a medi- tions and examining staff’s experience with death and grief cal model of care, with an emphasis on managing chronic are known to be crucial for providing compassionate care as conditions (Brazil, McAiney, Caron-O’Brien, & Kelley, the person’s grieving history provides the foundation upon 2004). LTC has now become an extension of chronic and which one builds skills for helping others with their losses complex continuing care where residents are frailer, have a (Churchill, 1999). However, a lack of organizational focus number of life-limiting illnesses, and choose to remain in on staff well-being and the lack of support from management LTC at the end of life (Brazil, Krueger, Bedard, & Kelley, can lead front line workers to experience complex grief reac- 2006; Wijk & Grimby, 2008). The average age of an Ontario tions (Anderson & Ewen, 2011). Other research suggests LTC resident on admission is 83, with 85% of residents clas- problematic outcomes where health care providers who deal sified as requiring high levels of care, meaning they need with death in an ineffective manner run the risk of not prop- constant supervision and assistance in performing one or erly caring for their clients (Brunelli, 2005; Durall, 2011). more activities of daily living (Sharkey, 2008). High rates of turnover among nursing home staff are well Eighty to ninety percent of direct care in LTC homes is documented, especially among PSWs (Riggs & Rantz, provided by unregistered PSWs (Berta, Laporte, Zarnett, 2001). Rosen, Stiehl, Mittal, and Leanna (2011) studied fac- Valdmanis, & Anderson, 2006; Riggs, & Rantz 2001). These tors associated with nursing assistants in nursing homes workers are responsible for multiple tasks, such as assisting leaving their job and identified low job satisfaction and emo- in bathing, eating, and dressing; reporting changes in physi- tional well-being as the most prevalent reasons. Staff turn- cal symptoms; and caring for the psychosocial needs of the over, in turn, negatively affects the nursing homes ability to resident (Anderson & Gaugler, 2007). Their workload is provide high-quality care. Recruitment and orientation of heavy, the resident-to-care worker ratio is high, and there is a new staff is time-consuming for managers and costly to the great attention focused on the completion of care tasks organization. In the palliative care field, lack of support for (Anderson, 2008; Sharkey, 2008). In addition, LTC homes staff grief and bereavement has been shown to contribute to are being required to take on a prominent role in end-of-life compassion fatigue, burnout, and poor retention (Showalter, care (McClement, Wowchuk, & Klassen, 2009) and thus are 2010; Slatten, Carson, & Carson, 2011; Vachon, 1995). One assuming many hospice-like functions. These conditions are strategy to improve staff satisfaction and potentially improve the context in which LTC staff currently work. staff retention in LTC homes is to provide a more supportive Marcella and Kelley 3 workplace that includes effective organizational strategies to et al., 2003). Literature shows that LTC workers do not feel help staff manage their grief and loss. supported in sharing their grief at work due to the lack of time and heavy workload, and thus they bring their grief home (Kaasalainen, Brazil, Ploeg, & Martin, 2007). Direct Care Workers’ Relationship With LTC To maintain their overall well-being, staff need to work Residents and the Impact of Their Grief through the grieving process to arrive at a healthy resolution with the client’s death (Brunelli, 2005). Anderson, Ewen, The relationships that are formed between LTC staff and and Miles (2010) found that health care aides who perceived residents are significant. Direct care workers perform duties their feelings of loss were validated experienced greater that have a high level of social and physical contact with resi- growth from the loss. LTC organizations may therefore want dents; subsequently, the relationships they form with resi- to consider the impact that unresolved grief can have on their dents are deeper than those formed by other health care employees, and recognize the benefit of providing grief and professionals (Anderson & Gaugler, 2007; Black & loss support to their staff. In examining how grief can be Rubinstein, 2005). The close bonds that are formed allow managed, Durall (2011) suggests the “the culture of silence” direct care workers to learn about the life experiences of the that surrounds the grief and loss needs to be broken. Creating resident, gauge residents’ emotional responses, and detect a work environment where staff are able to express their early changes in their physical condition. This information is grief, work within a supportive clinical team, and create a critical in providing holistic care for residents and their fam- meaningful context in which to place death are all identified ily (McClement et al., 2009). ways in managing grief (Burack & Chichin, 2001; Durall, Given the level of care provided and the relationships that 2011). develop between residents, their families, and direct care In summary, the LTC environment provides the context in workers, it may not be surprising that staff often view these which the grief and loss of staff are experienced and need to relationships with residents as familial. A metaphor of “fam- be managed. As more residents remain in LTC during the end ily like” or that residents are “extended family” has often of life, the direct care staff face the challenge of coping with been used by staff (Black & Rubinstein, 2005; Moss, Moss, these deaths. The relationships that are formed between staff Rubinstein, & Black, 2003; Rickerson et al., 2005; Sims and residents are close bonds, and thus the loss and bereave- Gould et al., 2010). When residents are considered like fam- ment needs recognition and support. Close emotional rela- ily, the emotional attachment may provide staff with a feel- tionships form the foundation of compassionate, ing of being appreciated and cared for by the residents well-informed quality care, specifically the kind of care that (Burack & Chichin, 2001), and for many residents, these for- is necessary in providing good palliative care. Therefore, it is mal caregivers become surrogate families (Rickerson et al., important for LTC homes to provide grief and bereavement 2005). support for their staff, and ensure that staff ’s health and well- Research has identified that the closer the staff–resident being are considered equally as important as the care of the relationship, the more intense the grief experience (Anderson older adults for whom the LTC environment is designed. & Gaugler, 2007; Durall, 2011). Individuals who deal with Supporting staffs’ grief may also contribute to improving death as part of their work, such as in LTC, need to find a retention of staff by enhancing their feelings of satisfaction way to make sense of death and dying. There is also evidence and emotional well-being. in the literature that how staff manage their strong grief reac- tions has an impact on resident care. Moss et al. (2003) state that emphasizing self-control over the expression of feelings Method can result in staff detaching from residents, especially when there is an expectation for staff to emotionally distance them- The overall purpose of this study in LTC homes was to selves to carry out their work duties efficiently. Van-Hein understand direct care workers’ experiences of grief and loss Wallace (2009) states that nurses may hesitate asking for related to the death of residents, their support needs, and emotional support for fear of being considered unprofes- their perception of the role the organization should play in sional or unable to work in a highly emotional workplace. supporting staff with these losses. The following research This perceived expectation of emotional distance reinforces question was used to guide the study: an organizational culture of denial and silence around death and dying in LTC homes. Research Question: What supports do LTC staff want Given the lack of support, time, training, and opportunity and need in the workplace to help them manage their grief to manage grief in the workplace, it may not be surprising and loss when residents die, and how are these best that direct care workers believe that they are expected to just offered? “deal with it” when it comes to managing grief (Brunelli, 2005; Burack & Chichin, 2001). This belief may lead care This research addresses an identified gap in the literature staff to maintain a culture where death of a resident is struc- as previous research has not concentrated on the impact of tured to have a minimum impact on the work at hand (Moss grief on direct care workers in LTC settings. These findings 4 SAGE Open can provide the organization valuable directions to create The interviews began by asking the participants to gener- strategies and policies to promote workplace wellness, which ally describe the extent to which grief is an issue for staff include supporting staff grief. The outcomes of this research working directly with residents. Participants were then asked have been incorporated into the QPC-LTC Alliance’s frame- how the death of a resident affects them emotionally. The work and toolkit that are available to guide developing pal- interviewer explored more specific interpersonal factors such liative care in LTC homes (see www.palliativealliance.ca). as the coping strategies used by each participant and how the This exploratory research used a qualitative approach to workplace environment supports them through the grieving understand the experiences and perspectives of nurses and process. Participants were also asked to comment on how the PSWs who work in two faith-based non-profit care homes in workplace can better assist and improve support services. Thunder Bay, Ontario. The first home, built in 1979, pro- vides specialized nursing care to 110 residents, and it offers Data Analysis a palliative care room for residents’ and families’ privacy. The second home opened in 2004 and accommodates 96 The interviews were audio taped and transcribed verbatim by residents. A unique feature of this home is in its construction the research assistants (RAs). All transcripts were then made and design, providing each room with a view of an outdoor available to all RAs to review. A three-level process of ana- space. lytic induction (Huberman & Miles, 1994) was used to Ethics approval was obtained from Lakehead University reduce the data into four overarching categories that together and St. Joseph’s Care Group. portrayed a complex picture of the staff’s experience and support needs related to grief, loss, and bereavement. To ensure rigor, a process of peer review occurred among eight Participants researchers at each level of analysis. Consensus was reached A purposive sampling technique was used to recruit nine on the evolving analysis. staff members who represented all three categories of LTC RAs initially independently coded the transcripts manu- direct care workers: RNs, registered practical nurses (RPNs), ally to identify all participants’ ideas. Sitting as a group with and PSWs. Participants were recruited by two PSWs who the senior researcher, the ideas were systematically com- worked in the study site homes, each working in one of the pared and discussed, and the themes were agreed upon. LTC homes. They selected and invited staff who they per- Discussion continued at four weekly 3-hr meetings until ceived to be knowledgeable informants for the study purpose agreement was reached that the analysis fully and accurately to participate in the research. These two PSWs were well represented the participants’ narratives. respected and well known by all of the LTC staff. Nine par- During the analysis meetings, initial ideas were grouped ticipants volunteered for the study who had extensive experi- into 38 (Level 1) themes according to their common features ence caring for dying residents and spent the majority of and meanings. These themes were then grouped into 12 their working time providing direct care to residents. (Level 2) explanatory themes and finally into four overarch- Participants included one RN, one RPN, and seven PSWs. ing (Level 3) categories. The categories were created induc- All participants were female, ages ranging from 20 to 54, and tively to explain the Level 2 themes and informed by the all with more than 3 years of experience working in LTC. purpose of the research. At each level of coding, the emerg- The majority of the LTC staff in the study sites were female, ing themes and categories were displayed on the wall using and no males volunteered for the study. However, the absence concept maps. These concept maps are included in the of male staff in the sample was a limitation of the study. description of the findings. Results Data Collection The grief and bereavement experience and support needs of Individual semi-structured interviews were used to collect LTC direct care workers can be understood through four data. All interviewers were trained graduate students in the overarching categories: (a) organizational context influences Master of Social Work(MSW) program at Lakehead staff’s experience of grief and loss, (b) the burden of grief, University, Thunder Bay, with each student conducting one (c) the emotional impact of grief, and (d) grief support needs interview, using an interview guide. The location of the inter- of direct care staff. Each category has a number of themes view was selected by the participant, and the interviews and sub-themes that are supported by direct quotes from par- lasted from 30 min to 1 hr. The meetings all occurred in loca- ticipants that are taken from the data. tions that allowed confidential conversation, such as at the workplace in a meeting room, in the public library meeting room, or in the participant’s or interviewer’s private home. Organizational Context Influences Staffs’ Interviews were conducted in a conversational style. Open- Experience of Grief and Loss ended questions guided the interview yet allowed flexibility The organizational context is the first overarching theme that to adapt to the narratives emerging and areas of interest emerged from the data in understanding the grief process of raised by the participants. Marcella and Kelley 5 Figure 1. Organizational context of LTC influences grief and loss for direct care staff. Note. LTC = long-term care. EOL = end-of-life. direct care workers. The participants spoke about the work letting go and passing are used in place of dying or died. This environment and how this environment affects their grief idea is indicative of the lack of comfort within the organization experience. Several themes were identified: death is hidden, to explicitly name the events that are taking place when it there is no training to prepare staff for loss, death is part of comes to the dying process. Participants often stated, “So the job, and there is a silent culture that exists around dying. when she left, like when she passed away . . . ” or “If I am hav- A thematic diagram, depicting the category, theme, and sub- ing trouble with somebody just passing . . . .” These statements themes, is included in Figure 1. all make reference to death, without actually using the word. Participants identified that no formal notification to resi- Death is hidden within the LTC culture. The organization attempts dents and support staff about a resident’s death exists in the to create a home-like setting for residents, and death is not home. Residents will ask staff about other residents who explicitly incorporated into the culture. The participants identi- have died; however, this information is not provided due to fied the theme that death is hidden from the residents and from the misperception of many staff that confirming that a resi- direct care staff, including those not providing direct care such dent has died is a breach of confidentiality. There is no as dietary staff. Staff elaborated that there is little communica- immediate formal service or ceremony within the homes that tion about death although there are informal and unofficial would inform residents of a death, although there are memo- pathways of communication within the homes. Staff may learn rial services held twice a year. Death is also hidden from of a resident’s death informally through coworkers or outside other support staff such as dietary or housekeeping as there is community sources. The responsibility to obtain information no formal process of notification in place. The following rests with the staff member as illustrated in the following quote: quotes provide evidence of how death is hidden: I was off for three days and I walked off the elevator and never When they die, their tag from outside their room goes on the “in noticed that her name was on the board, but she’d passed . . . and memoriam” board. So that’s how they officially know that the in the middle of report I was . . . “you know this bed’s empty” person is dead . . . that’s it, they don’t have a little announcement . . . it’s like hold it, what happened here? (PSW) or a moment at breakfast . . . . (RPN) The participants indicated that explicit language around You know it really affects them [residents]. Like you can have death does not exist. When staff refer to death, the terms four people at a table every day for dinner, breakfast, lunch, and 6 SAGE Open then that person’s not there . . . so all of a sudden there’s a new environment where death is a common occurrence. Partici- face at the table. (PSW) pants identified that there is an established hierarchy of emo- tional engagement between staff and the residents, depending No training to prepare staff for loss. Participants identified that on their professional role. This hierarchy begins with the there is no training to prepare staff for loss of a resident, nor PSWs at the bottom, and works up through the RPNs to the is there any information given with regard to available sup- RNs, and then to managers. The participants’ perception is ports and resources when experiencing grief. They stated that the emotional burden of grief decreases the higher the that during the orientation process there is no discussion staff member is on the professional hierarchy. Evidence of around the prevalence of death. The purpose of orientation this perception is demonstrated with the following quotes: was to prepare staff for their role within the organization and to give them an opportunity to ask questions. However, the . . . there’s support . . . not from the managers so much . . . I don’t think that it’s intentional . . . they have their own things that they focus of management in training initiatives centers on direct worry about . . . I think because they don’t have as much care practice, and not on grief and loss. The lack of discus- interaction with the clients as we do . . . that’s not one of their sion identifying the prevalence of death does not give staff a priorities. (PSW) chance to inquire about death or provide staff an opportunity to ask about the resources available to them. The following . . . we’ve always approached each other, “how are you doing?” gives evidence: or “are you doing ok?” . . . I’ve never seen an RPN, RN, or management come up to a worker and say “are you ok?” and There’s nothing that I’m aware of that’s in place . . . it is bad “are you going to be attending the funeral?” . . . I have never because I think even with orientation as a new employee you seen anything like that. (PSW) should be told what you can do, and there’s nothing that I’m aware of that’s even in place. (RPN) There are many expectations placed on staff to provide emotional and informational support to the resident, as well Participants stated that they learn how to manage grief as their family. However, resources do not match role expec- “on the job,” primarily by observing others and monitoring tations. Participants identified that there is nothing in their reactions from them. In particular, when new staff are trying training to prepare them for the supportive role, and the to integrate into the existing culture, they learn from more resources available within the home such as pamphlets and experienced workers. The informal relationships among guidelines do not support the staff with this expectation. staff, in trying to help one another cope with the demands of Furthermore, the lack of time, the demand to complete tasks, the workplace, are integral to the culture in LTC. There are and the lack of emotional support offer little comfort to staff no written procedures to cope with grief; rather, it is the rela- with their own grief experience. This idea is illustrated with tionships developed among staff that guide others through the following quote: the process. This idea was spoken of several times: So it’s always the staff, the staff helping the staff which isn’t bad, but if you don’t have the training you know how do . . . there’s a lot of knowledge, like even approaching family and you help someone through that [grief] (RPN). dealing with families and as new people come into the home . . . they get watched lots by the older staff . . . that’s how I learn too Participants indicated that they have close relationships . . . my older staff and how they deal with people . . . . (PSW) with residents and their families, and they are accustomed to seeing families regularly. However, once a resident dies and Our senior staff . . . they’ve been around a long time . . . they’re the room is cleared of the body and possessions, this relation- the ones that are teaching us how to deal with everything. (PSW) ship with the family abruptly ends. Participants identified an emotional loss of both resident and family; there is no oppor- Participants indicated that communication with residents tunity to express their grief over the loss of these relation- and their families is difficult; however, it is an important part ships, just expectation to carry on with the job. These multiple of their role, and these skills require education. They are fre- losses result in an emotional burden for the care providers. quently asked questions about death and dying by family and The following quotes demonstrate staffs’ multiple losses and residents. Participants stated that they are often uncomfort- the emotional burden: able and feel unprepared to respond to difficult questions. Staff were aware of bereavement pamphlets for family but They’re all very important to me . . . I’ve pronounced many, I’ve identified that sending family off to talk to someone else felt seen a lot in my life . . . we’ve just lost six in the last few months impersonal. . . . it was pretty hard, we hadn’t grieved yet . . . I lost track now. (RN) Death is part of the job. Participants have an implicit under- standing that managing residents’ death is part of what they Because what happens is they become our family, like you get close, you see them every day and all of a sudden it just stops. do. This understanding does not come from open discussion (RPN) or instruction; it comes from the experience of working in an Marcella and Kelley 7 Silent culture exists around dying. PSWs identified that there death is part of the LTC environment, they expressed diffi- are many unwritten rules and implicit expectations around culty with experiencing death on a regular basis. Evidence the delivery of care that guide practice and help staff in cop- supporting this notion is given with the following quote: ing with the demands of work. This silent culture assists They’re [deaths] all hard to deal with . . . even though you do a them to meet the expectations placed on them by manage- lot of it, you still have a hard time . . . doesn’t matter how many ment. There is an understanding among staff that death is you’ve looked after or dealt with. (PSW) part of the nursing culture. The significance of this under- standing emerges as staff strongly believe that during the Participants spoke about managing emotional attachment dying process the residents are not to be left alone in their and detachment. They have dual responsibility to effectively rooms. There should always be someone present, especially attach to residents in an effort to provide what they describe if there is no family around. Staff hold one another account- as quality care, while they must be able to detach when the able to provide comfort to the dying client. The following resident dies to carry on with their routines. This idea is quotes support this idea: described with the following evidence: We are here for a reason and the reason is for the end of life. I guess we’re just expected to be strong and we just have to . . . (PSW) accept that it’s gonna happen . . . we’re always getting new people in afterwards right? So we just have to keep going. (RPN) She died [with no family], she was a ward of the state and she was by herself, and that’s what killed us the most . . . these Sometimes we have a resident that dies and two days later people that have no family, they need someone to represent there’s someone in that bed . . . and you’re learning all about them. And she died alone, but she was in her home, right? (PSW) somebody new and you haven’t actually grieved the loss of the last person. (RPN) Staff develop close relationships with residents and subsequently do not like to see residents suffer in any way. When death is As a result of feeling a lack of control over death, staff seek imminent, staff view it as a welcome end to the pain and ways to regain control through their work and relationships. suffering that the resident may be experiencing. At the same They recognize that everything they did for the residents and time, however, there is a sad emotional reaction to the loss of the their families had an impact. Through their proactive and relationship. In welcoming an end to the pain and suffering, staff positive actions, staff members are able to recover some of their acknowledged that giving the resident permission to let go is a lost control. The following quote supports this idea: I’m the one form of support for the resident and a form of closure for the who takes control, everybody else gets to cry. I don’t. I cry on staff. They view death of a resident as meaningful and sad. A my own, but with helping them I’ve helped myself. (RPN) participant shared her experience, stating: Staff use coping strategies to manage grief. Some of the par- I hate the part of watching them suffer. So once they go, you know it’s kind of a relief to some extent . . . I would never want ticipants reported that they do not feel sufficiently prepared somebody to stay alive and in pain. (PSW) to deal with the grief process in LTC. As a result, participants rely on their own personal coping strategies, which vary from person to person. A number of sub-themes emerged The Burden of Grief when staff spoke of these strategies. The importance of letting go of the resident is an experi- Grief is undeniably present in the LTC homes. It is also inev- ence shared by many participants. They clearly expressed the itable that staff develop relationships with residents as they importance of being present at the time of death to offer com- are providing not only physical care but also a continued fort to the resident and also to give themselves a comfort presence in a resident’s everyday life. Each staff member’s knowing the resident was not alone. By drawing on personal experience of grief is individualistic, with a complex set of experience, expressing love for the resident, and mentally personal and organizational circumstances affecting the grief preparing themselves for loss, staff members feel that they burden. Two themes are identified: no relief from grief and are better able to cope with the resident’s death, as expressed loss, and staff ’s coping strategies to manage grief. A thematic through the following quotes: diagram depicting the burden of grief is included in Figure 2. I spend time with them . . . if I want to sit and hold their hand No relief from grief and loss. The grief and loss are part of the . . . or talk to them . . . just doing care on them. Being there, nature of work that is done in LTC home, and the direct care letting them know that I’m here . . . it all helps. (RPN) workers learn to manage emotional detachment from resi- dents after their death. There is no control over death, and If you go in knowing you’re there to make them comfortable just staff learn individually to cope with the loss of residents. Par- until they pass away, then you mentally prepare yourself for it. ticipants explained that grief is a continual emotion that is It’ll still hurt, but you’re mentally knowing that person’s dying. I’m just here to make them comfortable till they’re gone. (RPN) embedded in the nature of the work that is done. Although 8 SAGE Open Figure 2. The burden of grief for direct care staff working in LTC. Note. LTC = long-term care. Participants noted that using humor is often necessary to a source of support and aid in staff’s coping with the loss manage work-related grief. Staff indicated that the work envi- when a resident dies. The idea of forming relationships is ronment would be depressing if they could not find some humor evidenced through the following quote: in their work. This idea is supported with the following quotes: It’s a family . . . you become part of the family when you work there . . . nobody’s really excluded. (PSW) Some of us are very good to each other . . . we are all laughing and goofing the vast majority of the time . . . it could be a really depressing place if you let it be, but I figure . . . I’m going to The Emotional Impact of Grief work for like eight hours a day every day of my life . . . I want to be happy while I’m there. (PSW) Participants were able to describe the emotional impact that grief has on them. Two themes emerged from the data: there He hadn’t conversed with anybody or said anything . . . and we are no formal organizational processes to handle their grief, thought there’s no way this guy’s going to sing. Oh we started and participants’ coping strategies to manage the grief. A the- singing “Happy Birthday” and he sang along with us . . . it was matic map, illustrating the emotional impact of grief, is hilarious. Oh it was funny . . . humor and bad singing. (PSW) shown in Figure 3. Participants indicated the significance of creating meaning No formal organizational process to handle grief. Participants around a resident’s death. This meaning is constructed by clearly indicated that there is no organizational process avail- focusing on the value of the lived life of the resident, bringing able to address their grief experience. When a resident dies, attention to what the resident brought into the LTC facility, and the contribution the resident made to the lives of staff who cared there is no formal opportunity for closure. The participants for him or her. The importance of creating meaning is illustrated are expected to carry on with their tasks, without any formal below: acknowledgment that the residents’ death may have an impact on them. The following quotes illustrate this: If it’s an 80 or 90 year old and you think about all the things they’ve accomplished in their life, I just find it so much easier to I went home crying [after a resident died]. You know, there was get over it. It doesn’t bother me as much. (RPN) no one to talk to, no one to vent nothing. It was just “oh my gosh, this woman just died today and we didn’t say nothing and there Participants pointed out that the relationships that are was nothing for us.” (PSW) formed in LTC among staff, residents, and family are essen- tial to managing their grief experience. The relationships She passed away last week . . . she’s got no funeral, no nothing and it’s really, really hard. How can we have closure for that were often described as being family-like bonds that provide Marcella and Kelley 9 Figure 3. The emotional impact of grief on direct care staff in LTC. Note. LTC = long-term care. lady? It’s sad . . . we don’t have a funeral for her, we don’t have experiencing grief at the same time. Each participant spoke anything in place at work other than us talking about her and of witnessing other coworkers struggling emotionally fol- talking about the little funny stories. (PSW) lowing the death of a resident, and this often has the effect of staff pushing aside their own grief to support their fellow The meaningful relationships that exist with residents coworker. Evidence of this idea is given with the following also exist with the resident’s family. When residents die, staff quotes: members lose not only the resident but also the relationships formed with family members. This multiple loss experience You can see that they’re in pain and the suffering from the. . . . was mentioned on several occasion and evidenced by the fol- partner, you can kind of see it in their eyes . . . so we support her. lowing quote: (RPN) The full time staff that are there 5 days a week . . . really get to I graduated two years ago . . . they [school] deal with death and know the residents well . . . and the families as well. So when dying . . . the breathing slows down, the organs shut down, they someone passes, it affects them quite a bit. (RPN) deal with the book, they don’t deal with the life. They don’t say okay . . . you’re going to see families be hysterical . . . you have to let them grieve their way and you have to be there to try and It was explained that given the relationships formed with support them if you can. (PSW) residents, it is sometimes easier to deal with the death of a resident when staff is not working at the time. Being present Coping strategies to manage grief. Participants identified a at the time of death can be difficult, and reading about it in number of factors that have an influence on how grief is the paper at a later date is sometimes easier. This was evi- experienced in the LTC setting. This theme has a number of denced when a participant stated, supporting sub-themes that emerged from the ideas in the data. I feel that when you’re away from the facility, you don’t have Participants described that there are different grief reac- that much of an emotional connections with them as when you’re right there beside them and you’re watching them. (RPN) tions among staff, and these reactions vary according to their work and personal experience. Self-reflections by staff about Despite their own emotional struggle over the loss of a the value of their role also appear to play a critical role in resident, participants identified the importance of offering how a resident’s death is experienced. Some participants support to family who are grieving the loss of their loved self-reflected, stating that their work role of caring for those one. There is also an awareness the colleagues may be who are dying helped make the life of the residents well lived 10 SAGE Open and as comfortable as possible. This view provides comfort within these relationships that influence the experience of to the staff as evidenced through the following quotes: grief. This is supported with the following quotes: If I can make a difference, that’s what life’s about. If you make There are some hard ones. There are some hard deaths . . . not to a difference in somebody else’s life, then that is what I’m here say you have your favorites, but you do have favorites. So you for. I’m here for that, for sure. (RPN) have people that you really get to love in a way. (PSW) Being comforting to the other person, that was my strategy, that The staff are very sensitive to their care because we have had was my coping strategy, knowing that I could be comforting for most of the residents that pass away or on their way out, have somebody else. (PSW) been with us for many years. Sometimes it’s almost like their part of them, family wise . . . if they see them any which way in distress while at the end of life, they get very upset and they However, participants described that the lack of personal come to us right away. (RN) experience with death influences how staff would process the event. Many staff beginning employment in LTC have The support staff offer to one another appears to be inte- not witnessed a death or experienced a loss through death. gral to the strength and resiliency displayed among partici- The following quote provides evidence to this sub-theme: pants in managing their grief experiences. Participants described the importance of camaraderie when death occurs; Some people don’t know how to grieve. Some people are they turn to one another to find support for their grief. If the working in long term care and maybe they haven’t really lost somebody close to them so they really don’t know . . . how to support is not there, they take their grief home and seek out grieve or how their emotions are going. (PSW) support from family and friends. Participants identified that the circumstance surrounding Grief Support Needs of Direct Care Staff the death of a resident is a significant factor contributing to their grief reaction. If the death was described as a “good Participants were asked to suggest how their LTC workplace death,” where the resident was not alone, pain was managed, can better assist and improve grief support. They were very and the resident was comfortable, then staff were better able clear in stating that “something” needs to be put in place to to come to terms with the resident’s death. If the death was support staff with their grief and loss. The 4 themes and 12 described as a “bad death,” whereby the resident appeared to sub-themes that emerged from participant data appear to be be suffering, pain was not managed, and the resident died manageable to implement in an organization and do not alone, then staff experience moral angst associated with that appear to require much in added resources or money: educa- death. Participants were strong in voicing the importance of tion, peer support during grief experience, formal supports, providing the resident with comfort, support, and presence at and established protocols after resident’s death. Much of the the end of life as this influences their perception of the resi- change relates to creating an organizational culture that dent’s experience, as well as their own grief experience. The acknowledges that LTC is a major site of death and that it has following quotes provide evidence for this sub-theme: consequences for staff who work there. A thematic map, demonstrating the overarching category, themes, and sub- We were all with him, they finally got the daughter on the phone themes, is found in Figure 4. and we were able to put the phone to his ear and that was the last thing he heard was I love you daddy and then he took his last Education needs. Participants identified that education is breath. And it was just, we were all there and it was really needed to support them not only in the palliative care work humble. It was just incredible to be there at that moment. (PSW) done in LTC but also with how to manage their own grief and loss. They acknowledged that new workers are often unpre- I felt it was a blessing in a way sometimes it’s a blessing that pared for managing the emotional experience of a resident they do go . . . if they lay there and suffer . . . she was suffering dying. It was indicated that if grief was talked about openly through cancer, the top of her head was cancerous and draining at orientation, it would prepare new staff for what to expect . . . you sometimes think it’s a good thing. (RN) and also provide them with information on who to contact if further support is needed. Some deaths are not so beautiful. (PSW) Participants stated that it would be helpful to have grief and bereavement information visibly posted on the floors. Participants identified that the issue of grief is deeply The workers are currently unaware of what resources are influenced by the nature of the relationship staff have with available for them, and where to refer families for grief and each of the residents and their families. They stated that bereavement support. It was suggested that cards or pam- although the care they provide may be uniform from resident phlets posted on bulletin boards would be helpful to those to resident, the interpersonal relationships they develop with seeking assistance. individuals are unique and variable. It is the differences Marcella and Kelley 11 Figure 4. Grief support needs of direct care staff in LTC. Note. LTC = long-term care. Peer support. Participants were very clear that the most ben- supporting staff with their grief and loss. They frequently eficial forms of support come from their own peers. Ideally, mentioned the importance of having some form of staff it should be peers guiding them through the grief process as debriefing right after or shortly after a resident had died. The the relationships they have established with their coworkers description of the preferred debriefing is to be short in length are comforting. Participants also talked about the importance as it was recognized that staff do not have time to leave the of mentoring younger staff on what to expect when a resident floor. It should be peer-led and provide staff a general oppor- dies, and how to say goodbye to a resident. The knowledge tunity to discuss what had happened. The following quotes of experienced staff is a credible source of support and com- give evidence for this idea: fort when dealing with the emotional challenges of working Even a monthly meeting or debriefing where we can all go and in a LTC environment. The following quote illustrates the say what we want to say about the person or . . . somewhere we idea of peers guiding peers: can go talk about the people that have passed . . . or just acknowledge that they were there, that they are gone and that Having fellow staff members to guide you through something they meant something to us, so that formally we can all meet and like that, I think that’s probably the best way to go through it. whoever wants to go can go. (PSW) (PSW) A debrief, depending on the circumstance of the death, or the Participants stated that talking about the resident after his passing of the resident, because some of them are, well some or her death is an important way of memorializing that per- of them are beautiful and some of them are not so beautiful. son. Reminiscing about the resident enables staff to come to (PSW) terms with the loss of the resident. It also brings meaning to the care staff provided as it is important for workers to feel Participants identified that there is one spiritual care advi- the care given was appreciated and meaningful. The follow- sor who is shared between the two LTC homes involved in ing quote expresses this idea: the study, and it would be beneficial for both homes to receive equal time. However, they recognize that this is dif- Well sometimes at the nurses’ station . . . we will talk about it ficult to accomplish and the demands in both facilities need when it’s in private . . . we’ll talk about the individual and sharing, attention. Ideally, having a social worker on premises to you know, good things about the person, and people laughing a assist with family concerns outside the scope of health care little bit, and if somebody wants to cry, they can cry. (PSW) staff practice would be helpful. The two LTC homes in this study did not have social workers and this was a perceived Formal support for grief and loss. Participants identified sev- need by the participants. eral key areas in which the organization can take the lead in 12 SAGE Open Participants stated that they have rarely experienced man- the need for a protocol to support residents and family mem- agement acknowledgment of the impact that a resident’s bers when death occurs. The following quotes demonstrate death has on staff. They find managers generally caring, and this: they recognize the demands of the management role. Because you’re not going to push off someone who is crying and However, participants stated that “it would be nice” if a man- grieving, and just be like, “no I’m sorry I have to go” . . . they ager would proactively and explicitly acknowledge staffs’ need someone that would listen to their concerns. (RPN) feelings after a resident had died and ask whether there is anything that a staff member may need. Once this individual passed, I really expressed my feelings Currently, there is an informal process used among staff towards the caregiver . . . how much we, how much I enjoyed to communicate when a resident dies. Participants contact them, him, the person . . . and if there’s anything I can do. (PSW) one another via cell phone or text to notify one another of a resident’s death. This system works well for some staff, but as this is an informal and non-systematic process; some peo- Discussion and Implications ple may be left out of the notification. Participants identified The results of this study demonstrate the complexity of direct that it is helpful to be aware of a death, instead of learning care workers’ experience with grief and loss in LTC. These about it on shift report or from the announcement that a new staff are faced with the presence of grief on a daily basis, resident has moved into that room. Knowledge of a death with a number of factors influencing how their grief is man- helps them emotionally prepare for the loss and avoids unex- aged. Although a limitation to the study was a small number pectedly receiving the news, as illustrated in the quote below: of participants working in two LTC homes, the data are rich, If it’s report when we walk in and . . . so and so passed away and the findings are supported by other literature. This . . . if you’re off for a couple of days, you know it’s like What? research expands knowledge on the impact that a death of a . . . There isn’t anything specifically in place for it. (PSW) resident has on the LTC staff, and identifies clear strategies that can assist in developing organizational policies and Protocol after resident death. Participants identified a need for practice to support the health and well-being of their staff. acknowledging each resident’s death within the home. Spe- The organizational context of LTC clearly influences the cific ideas that would support staff’s grief process have experience of grief and how it is managed. The lack of a emerged from the data. A memory tree with residents’ names formal policy and support strategies can be seen as an on it and an annual Christmas tree decorated in memory of implicit policy not to recognize death and its impact on the past residents are suggestions that staff feel would memorial- organization. The silence surrounding the death and dying in ize residents with greater meaning. LTC and lack of acknowledgment that staff are affected by Participants noted that the home holds celebration ser- the loss of residents they care for deny staff the opportunity vices on an annual basis; however, it was felt that with the to process and move through their grief. large number of residents dying each year, an annual service The findings of this study are supported by other similar is not enough. The celebration services need to be held research that validates this work. In Durall’s (2011) study, sooner in recognition of residents’ death. In addition, imple- the key variables that affect the grief experience of health menting an established ritual immediately after the resident care professionals are identified, arguing that the silent cul- has died would also support staff in their grief process. The ture around death needs to be broken to encourage the healthy following quotes support staffs’ desire for a ritual: expression of grief in the work environment. The study by Burack and Chichin (2001) explored nursing assistants’ feel- I just think it would be nice if there was something that even in ings, experiences, and needs when providing care for the your own private time we could even go in there for two minutes dying, and found that even though nursing assistants were and think about that resident that they took care of. You know I taught the mechanical components of the job, staff were not think that would be nice. (RPN) informed about the emotional involvement and responses to the dying. The same findings were obtained in the study pre- There’s got to be something out there and I think just the chance sented here as participants indicated that they had no training to express yourself . . . what is a funeral, it’s somebody talking to prepare them for the losses they inevitably encounter. about this person that they love . . . or respected . . . or was close Thus, care workers rely on one another and learn “on the to and it just gives people a chance to say good-bye. And we job” when it came to managing their grief and loss. Even don’t do that . . . it’s a horrible feeling when you don’t get that chance to say good-bye. (PSW) without training, participants acknowledged that death is part of the job; they are faced with the emotional burden of mul- Participants acknowledged the importance of recognizing tiple losses, of both residents and residents’ families with the impact a resident’s death has on other residents and fam- whom they have formed relationships. ily members. They indicated that not having time to sit with Study participants noted that there is a burden with grief, other residents, or inform them that a death had occurred, is and grief and loss are embedded in the nature of the work emotionally difficult and “not fair.” Participants recognized done in LTC. They learn how to emotionally detach from Marcella and Kelley 13 residents when a death occurs; however, they must learn to 7. Implement organizational strategies and rituals to reconnect to new residents being admitted to LTC and remain acknowledge all residents who die in the LTC home. emotionally attached to other residents they are providing Examples include creating a memory tree, having a care to. Similar findings have been identified in Burack and regular memorial service or ceremony, or conducting Chichin’s (2011) research, where nursing assistants expressed a room blessing. difficulty adjusting to the fact that the bed is filled immedi- 8. Support staff with the time and resources to reach out ately after a resident’s death, with no time for staff to mourn, to residents and staff after the death of a resident to and the difficulty in beginning a new relationship so soon acknowledge their grief and loss. This not only sup- after the loss, knowing that the painful process will be ports others but also promotes a sense of completion repeated. A finding, not previously identified in the literature for staff, aiding in the resolution of grief. but presented here, is the existence of many unwritten and implicit rules that guide staff in the delivery of care for dying Many of these strategies are examples of innovation from residents and their families. For example, participants spoke within the home, requiring little in the way of cost or external of a strong belief that residents should not die alone. Thus, in resources. Involving direct care staff in the development and the absence of explicit organizational policy to guide them, implementation of these strategies is an effective way to staff learn through mentoring, use personal life experience, address their support needs related to grief, loss, and and experience on the job. bereavement. Previous research has recommended innovation in look- ing at ways to improve palliative care provided by LTC Conclusion (Brazil et al., 2004). In this study, participants offered not only innovative but also practical strategies on how direct The direct care workers’ experience of grief and loss is com- care workers can be better supported. Thus, the findings of plex. LTC staff are continually faced with the presence of this study have implications for the development of policy death, with a number of factors influencing how their experi- and procedures in LTC homes. The following recommenda- ence with grief is managed. Currently, there are no formal tions for managers in LTC homes emerged from the study organizational processes in place to assist staff with handling findings: their grief; this situation compels them to rely on one another for support. Direct care workers are in the best position to 1. Implement a regular program of palliative care edu- identify the support and resources they need to manage their cation for staff, including strategies for managing grief and loss. A formal process for supporting grief and loss their grief and loss. Education needs to occur at ori- in the work environment is needed as a component of a holis- entation of new staff and routinely for all staff tic and inclusive palliative care program in LTC settings. thereafter. This may also contribute to staff satisfaction and ultimately 2. Make information visible and accessible to staff for retention. both their own use and to offer as support for bereaved It is hoped that this research will assist in the development families, for example, pamphlets about grief and and implementation of organizational policy and procedures, where to access counseling resources. addressing the health and well-being of direct care workers 3. Recognize the benefits of informal peer support in in LTC homes. As LTC homes increasingly provide pallia- LTC and the value of experienced staff mentoring tive care as a core part of their services, death becomes part inexperienced staff, especially where staff have no of the job of direct care workers. Staff need education and previous experience of death and dying. Acknowledge support to manage their grief and loss to provide quality pal- and value the staff mentors. liative care. The culture of LTC must evolve to explicitly 4. Encourage staff to reminisce about residents after acknowledge that resident care is provided until the end they have died and let staff know that the end-of-life of life. Eight strategies were provided to assist in this care they provided to the resident is valued and evolution. meaningful. 5. Implement organizational procedures to support staff Acknowledgments dealing with grief and loss, for example, holding The author(s) would like to acknowldege and thank the following peer-led post-death debriefings after every death, fre- Research Assistants for their contribution with data collection and quent memorial services, and always acknowledging analysis: Sue Foster, Denise Groves, Stephanie Hendrickson, staff’s feelings of loss when a resident dies. Benjamin Mireku, Robert Sleeper, and Michelle Uvanile 6. Implement effective organizational communication systems to share knowledge of a resident’s death in a Declaration of Conflicting Interests timely way with all staff. Such methods could include issuing an email to all staff or creating bulletin The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. boards. 14 SAGE Open Funding Froggatt, K. A., Reitinger, E., Heimerl, K., Hockley, J., Brazil, K., Kunz, R., . . . Morbey, H. (2013). Palliative care in long-term The author(s) disclosed receipt of the following financial support care settings for older people: EAPC taskforce 2010-2012 for the research and/or authorship of this article: This research was report. European Association for Palliative Care. Retrieved supported by the Canadian Social Sciences and Humanities from www.eapcnet.eu/Themes/Specificgroups/Olderpeople/ Research Council (SSHRC) through the Community University Longtermcaresettings.aspx Research Alliance program and the Canadian Institutes of Health Hall, S., Kolliakou, A., Petkova, H., Froggatt, K., & Higginson, I. Research (CIHR FRN:112484). J. (2011). Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database of References Systematic Reviews, 3, CD007132. doi:10.1002/14651858. Anderson, K. A. (2008). Grief experiences of CNAs: Relationships CD007132.pub2 with burnout and turnover. Journal of Gerontological Nursing, Hirdes, J. P., Mitchell, L., Maxwell, C. J., & White, N. (2011). 34(1), 42-49. Beyond the “iron lungs of gerontology”: Using evidence Anderson, K. A., & Ewen, H. H. (2011). Death in the nursing home. to shape the future of nursing homes in Canada. Canadian Research in Gerontological Nursing, 4(2), 87-94. Journal on Aging, 30, 371-390. Anderson, K. A., Ewen, H. H., & Miles, E. A. (2010). The grief Huberman, A. M., & Miles, M. B. (1994). Data management and support in healthcare scale: Development and testing. Nursing analysis methods. In M. B. Miles & A. M. Huberman (Eds.), Research, 59, 372-379. Qualitative data analysis: An expanded sourcebook (2nd ed., Anderson, K. A., & Gaugler, J. E. (2007). The grief experiences of pp. 428-444). Thousand Oaks, CA: SAGE. certified nursing assistants: Personal growth and complicated Kaasalainen, S., Brazil, K., & Kelley, M. L. (2012). Building capac- grief. OMEGA, 54, 301-318. ity in palliative care for personal support workers in long term Berta, W., Laporte, A., Zarnett, D., Valdmanis, V., & Anderson, G. care through experiential learning. International Journal of (2006). A pan-American perspective on institutional long-term Older People Nursing, 9(2), 151-158. care. Healthy Policy, 79, 175-194. Kaasalainen, S., Brazil, K., Ploeg, J., & Martin, L. S. (2007). Black, H. K., & Rubinstein, R. L. (2005). Direct care workers’ Nurses’ perceptions around providing palliative care for long- response to dying and death in the nursing home: A case study. term care residents with dementia. Journal of Palliative Care, The Journals of Gerontology Series B: Psychological Sciences 23(3), 173-180. & Social Sciences, 60(1), S3-S10. Kagan, S., & Stricker, C. (2010). Symptom management. Journal Brazil, K., Kaasalainen, S., McAiney, C., Brink, P., & Kelley, M. L. of Gerontological Nursing, 36(11), 3-6. (2012). Knowledge and perceived competence among nurses Kelley, M. L., & McKee, M. (2013). Community capacity devel- caring for the dying in long-term care homes. International opment in participatory action research. In J. Hockley, K. Journal of Palliative Nursing, 18, 77-83. Froggatt, & K. Heimerl (Eds.), Participatory research in pal- Brazil, K., Krueger, P., Bedard, M., & Kelley, M. L. (2006). liative care: Actions and reflections (pp. 40-52). Oxford, UK: Quality of care for residents dying in Ontario long-term care Oxford University Press. facilities: Findings from a survey of directors of care. Journal McClement, S., Wowchuk, S., & Klassen, K. (2009). “Caring as if it of Palliative Care, 22(1), 18-25. Brazil, K., McAiney, C., Caron-O’Brien, M., & Kelley, M. L. were my family”: Health care aides’ perspectives about expert (2004). Quality end-of-life care in long-term care facilities: care of the dying resident in a personal care home. Palliative & Service providers’ perspective. Journal of Palliative Care, Supportive Care, 7, 449-457. 20(2), 85-92. Moss, M. S., Moss, S. Z., Rubinstein, R. L., & Black, H. K. (2003). Brunelli, T. (2005). A concept analysis: The grieving process for The metaphor of “family” in staff communication about dying nurses. Nursing Forum, 40, 123-128. and death. The Journals of Gerontology Series B: Psychological Burack, O. R., & Chichin, E. R. (2001). A support group for nurs- Sciences & Social Sciences, 58, S290-S296. ing assistants: Caring for nursing home residents at the end life Ontario Ministry of Health and Long-Term Care. (2007). Long- (CE). Geriatric Nursing, 22, 299-307. Term Care Homes Act, 2007. Retrieved from http://www.e- Canadian Hospice Palliative Care Association. (2013). A model to laws.gov.on.ca/html/statutes/english/elaws_statutes_07108_e. guide hospice palliative care. Ottawa, Ontario: Author. htm Canadian Institute for Health Information. (2012). Data quality Parker, D. (2013). The national rollout of the palliative approach documentation, Continuing Care Reporting System, 2011- toolkit for residential aged care facilities. Retrieved from 2012. Ottawa, Ontario: Author. http://www.uq.edu.au/bluecare/the-national-rollout-of-the-pal- Churchill, J. (1999). Grief: A normal response to loss. Home Health liative-approach-toolkit-pa-toolkit-for-residential-aged-care- Care Management Practice, 11(6), 1-3. facilities Durall, A. (2011). Care of the caretaker: Managing the grief process Ramsbottom, K., & Kelley, M. L. (2014). Developing strate- of health care professionals. Pediatric Annals, 40(5), 266-273. gies to improve advance care planning in long term care Fisher, F., Ross, M., & MacLean, M. (2000). A guide to end-of- homes: Giving voice to residents and their family members. life care for senior. Toronto, Ontario, Canada: University of International Journal of Palliative Care, 2014, Article ID Toronto. Retrieved from http://rgp.toronto.on.ca/PDFfiles/eol- 358457. doi:10.1155/2014/358457 english.pdf Rickerson, E. M., Somers, C., Allen, C. M., Lewis, B., Strumpf, Froggatt, K. A. (2001). Palliative care in nursing homes: Where N., & Casarett, D. J. (2005). How well are we caring for care- next? Palliative Medicine, 15, 42-48. givers? Prevalence of grief-related symptoms and need for Marcella and Kelley 15 bereavement support among long-term care staff. Journal of of Industry. Retrieved from http://www5.statcan.gc.ca/bsolc/ Pain and Symptom Management, 30, 227-233. olc-cel/olc-cel?catno=83-237-XIE&lang=eng#formatdisp Riggs, C. J., & Rantz, M. J. (2001). A model of staff support to Stolley, J. (2010). Caring for hospitalized older adults. Journal of improve retention in long-term care. Nursing Administration Gerontological Nursing, 36(8), 3-5. Quarterly, 25(2), 43-54. Travis, S. S., Bernard, M., Dixon, S., McAuley, W. J., Loving, G., Rosen, J., Stiehl, E. M., Mittal, V., & Leanna, C. R. (2011). Stayers, & McClanahan, L. (2002). Obstacles to palliation and end-of- leavers and switchers among certified nursing assistants in life care in a long-term care facility. The Gerontologist, 42, nursing homes: A longitudinal investigation of turnover intent, 342-349. staff retention and turnover. The Gerontologist, 51, 597-609. Vachon, M. L. S. (1995). Staff stress in hospice/palliative care: A Sanders, S., & Swails, P. (2009). Caring for individuals with end- review. Palliative Medicine, 9, 91-122. stage dementia at the end of life: A special focus on hospice Van-Hein Wallace, A. (2009). Supported nurses give better care. social workers. Dementia, 8(1), 117-138. Nursing Standard, 24(9), 54-55. Sharkey, S. (2008). People caring for people: Impacting the quality Wickson-Griffiths, A., Kaasalainen, S., Brazil, K., McAiney, C., of life and care of residents of long-term care homes (A Report Crawshaw, D., Turner, M., & Kelley, M. L. (2014). Comfort of the Independent Review of Staffing and Care Standard for care rounds: A staff capacity- building initiative in long-term Long-Term Care Homes in Ontario). Saint Elizabeth Health care homes. Journal of Gerontological Nursing, 41(1), 42-48. Care. Retrieved from http://www.health.gov.on.ca/en/com- doi:10.3928/00989134-20140611-01 mon/ministry/publications/reports/staff_care_standards/staff_ Wijk, H., & Grimby, A. (2008). Needs of elderly patients in pal- care_standards.pdf liative care. American Journal of Hospice & Palliative Care, Showalter, S. E. (2010). Compassion fatigue: What is it? Why 25, 106-111. does it matter? Recognizing the symptoms, acknowledging the Wowchuk, S. M., McClement, S., & Bond, J. (2007). The challenge impact, developing the tools to prevent compassion fatigue, and of providing palliative care in nursing homes, part 2: Internal strengthen the professional already suffering from the effects. factors. International Journal of Palliative Nursing, 13, 345-350. American Journal of Hospice & Palliative Care, 27, 239-242. Sims Gould, J., Wiersma, E., Arseneau, L., Kelley, M. L., Kozak, Author Biographies J., Habjan, S., & MacLean, M. (2010). Care provider perspec- Jill Marcella is a registered social worker with a specialization in tives on end-of-life care in long-term care homes: Implications Gerontology and a focus on Palliative Care. She is a research affili- for whole-person and palliative care. Journal of Palliative ate with the Centre for Education and Research on Aging & Health Care, 26(2), 122-129. at Lakehead University. Slatten, L. A., Carson, K. D., & Carson, P. P. (2011). Compassion Mary Lou Kelley, MSW, PhD is a professor of social work at fatigue and burnout: What managers should know. The Health Lakehead University, Thunder Bay Ontario Canada. Her research Care Manager, 30, 325-333. focuses on improving quality of care and quality of life for elderly Statistics Canada. (2011). Residential care facilities, 2009-2010 people with a focus on palliative care. (Catalogue no. 83-237-X). Health Statistics Division, Minister http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png SAGE Open SAGE

“Death Is Part of the Job” in Long-Term Care Homes: Supporting Direct Care Staff With Their Grief and Bereavement

SAGE Open , Volume 5 (1): 1 – Mar 10, 2015

Loading next page...
 
/lp/sage/death-is-part-of-the-job-in-long-term-care-homes-supporting-direct-sB7mJZmY9t

References (56)

Publisher
SAGE
Copyright
Copyright © 2022 by SAGE Publications Inc, unless otherwise noted. Manuscript content on this site is licensed under Creative Commons Licenses.
ISSN
2158-2440
eISSN
2158-2440
DOI
10.1177/2158244015573912
Publisher site
See Article on Publisher Site

Abstract

For long-term care (LTC) home staff who work directly with residents, death, dying, and grief are day-to-day experiences in their working life. However, staff are often overlooked for grief and bereavement support. This exploratory research used a qualitative approach to understand LTC staff’s grief and bereavement experience and to identify the perceived support needs of nurses and personal support workers who work in two faith-based non-profit care homes in Thunder Bay, Ontario, Canada. Findings indicated that participants’ experiences are complex, shaped by the emotional impact of each loss, the cumulative burden of ongoing grief, an organizational culture in LTC where death is hidden, and the lack of organizational attention to staffs’ support and education needs. Eight recommendations were developed from the findings. It is hoped that this research will assist in the development of organizational policy and procedures, addressing the health and well-being of direct care workers in LTC homes. Keywords long-term care, nurses, personal support workers, grief, workplace wellness Stricker, 2010; Sanders & Swails, 2009; Stolley, 2010). Introduction Support for grief, loss, and bereavement is acknowledged to For registered nurses (RNs) and personal support workers be an important component of holistic palliative care as per (PSWs; also known as health care aides or nursing assistants) Canadian Hospice Palliative Care Association’s (2013) who work directly with residents in long-term care (LTC) Model of Care. Research in specialized palliative care and homes, death, dying, and grief are usual experiences in their hospice programs is abundant and clearly demonstrates the day-to-day working life (Anderson & Gaugler, 2007; need for and benefit of addressing staff’s emotional needs to Wowchuck, McClement & Bond 2007). LTC homes increas- improve the quality of care and staff retention (Vachon, ingly provide end-of-life care, with approximately 20% of 1995). What is not well understood are the emotional experi- residents in Canada dying each year (Canadian Institute for ences of direct care workers working in LTC homes, espe- Health Information, 2012; Statistics Canada, 2011; Travis et cially how the organization can better support staff in al., 2002). Similar trends exist in England, United States, and managing their experience of grief and loss when a resident Australia (Froggatt et al., 2013; Parker, 2013). dies (Anderson, 2008; Anderson & Ewen, 2011; Rickerson et It is estimated that by 2020, this number will reach up to al., 2005). The presented research begins to address this gap 39% in Canada (Fisher, Ross, & MacLean, 2000). Thus, it in knowledge. should be anticipated that staff working in LTC settings will increasingly care for dying residents on a daily basis. Background However, these staff who provide direct care and assistance to residents and their families are often overlooked when it This study was conducted as a sub-study within a 5-year comes to recognizing their own grief and bereavement expe- project Improving Quality of Life for People Dying in riences. At the health system level, LTC homes have only Long-Term Care Homes (2009-2014), conducted by 27 recently been recognized as a major location of death, and therefore an important setting for providing palliative and Lakehead University, Thunder Bay, Ontario, Canada end-of-life care (Hirdes, Mitchell, Maxwell, & White, 2011). Corresponding Author: Palliative/end-of-life care literature identifies that special- Jill Marcella, Project Manager, Centre for Education and Research on ized training, skills, and education requirements are needed Aging and Health, Lakehead University, 955 Oliver Road, Thunder Bay, for the delivery of palliative care (Froggatt, 2001; Hall, Ontario, Canada P7B 5E1. Kolliakou, Petkova, Froggatt, & Higginson, 2011; Kagan & E-mail: jmarcell@lakeheadu.ca This article is distributed under the terms of the Creative Commons Attribution 3.0 License Creative Commons CC BY: (http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (http://www.uk.sagepub.com/aboutus/openaccess.htm). 2 SAGE Open researchers and 38 community organizational partners, col- It is within this environment that the grief, loss, and lectively known as the Quality Palliative Care in Long-Term bereavement experience of LTC staff is both framed and Care Alliance (QPC-LTC Alliance). The overarching managed. Presently in Ontario, there are no policies or estab- research was a participatory action research project that used lished practices that require LTC homes to address grief and a comparative case study design, with four LTC homes bereavement support for their staff. The Long-Term Care located in Ontario, Canada, as study sites (Kelley & McKee, Homes Act, developed by the Ontario Ministry of Health and 2013). The overall goal was to improve the quality of life for Long-Term Care (2007), establishes the need for policy to people who are dying in LTC homes through the develop- support all formalized programs, but the actual framework ment of palliative care programs, using a process of commu- and content of a formalized palliative care program including nity capacity development (Brazil, Kaasalainen, McAiney, the psychosocial and training needs of caregivers has not Brink, & Kelley, 2012; Kaasalainen, Brazil, & Kelley, 2012; been defined. Therefore, developing and implementing the Ramsbottom & Kelley, 2014; Wickson-Griffiths et al., 2014; palliative care program is left up to each home, and as a see www.palliativealliance.ca for further information). result, the LTC homes demonstrate inconsistent approaches Results of the organizational assessments, conducted in (Brazil et al., 2004). 2009 in the four LTC home study sites, indicated that direct The LTC setting provides little formal support for staff in care workers develop close relationships with residents and managing their grief and loss when a resident dies. Some experience a tremendous sense of loss and grief when these homes may have formal memorial services for deceased resi- residents die. However, there is minimal recognition and for- dents that can promote healthy grieving; however, staff are mal organizational response to support staff’s feelings of rarely provided with space, time, and professional assistance grief and loss. Based on these assessment results, the research to attend these memorials. Likewise, staff does not system- team decided to conduct a more focused and in-depth sub- atically receive training on grief and bereavement, despite study to better understand the inevitable grief and loss expe- the regular occurrence of death (Anderson, 2008; Anderson rience of direct care workers in a LTC home, including their & Gaugler, 2007; Burack & Chichin, 2001). As more resi- perception of how the organization can support them with dents live and die in LTC homes, it is important for staff to these losses. Recommendations emerged from these have access to support that enhances their ability to continue perceptions. providing compassionate and quality care (Rickerson et al., 2005). Finally, there are pressing organizational reasons to sup- Organizational Context of LTC port staff grief and bereavement. Acknowledging grief reac- Historically, LTC homes in Ontario have operated on a medi- tions and examining staff’s experience with death and grief cal model of care, with an emphasis on managing chronic are known to be crucial for providing compassionate care as conditions (Brazil, McAiney, Caron-O’Brien, & Kelley, the person’s grieving history provides the foundation upon 2004). LTC has now become an extension of chronic and which one builds skills for helping others with their losses complex continuing care where residents are frailer, have a (Churchill, 1999). However, a lack of organizational focus number of life-limiting illnesses, and choose to remain in on staff well-being and the lack of support from management LTC at the end of life (Brazil, Krueger, Bedard, & Kelley, can lead front line workers to experience complex grief reac- 2006; Wijk & Grimby, 2008). The average age of an Ontario tions (Anderson & Ewen, 2011). Other research suggests LTC resident on admission is 83, with 85% of residents clas- problematic outcomes where health care providers who deal sified as requiring high levels of care, meaning they need with death in an ineffective manner run the risk of not prop- constant supervision and assistance in performing one or erly caring for their clients (Brunelli, 2005; Durall, 2011). more activities of daily living (Sharkey, 2008). High rates of turnover among nursing home staff are well Eighty to ninety percent of direct care in LTC homes is documented, especially among PSWs (Riggs & Rantz, provided by unregistered PSWs (Berta, Laporte, Zarnett, 2001). Rosen, Stiehl, Mittal, and Leanna (2011) studied fac- Valdmanis, & Anderson, 2006; Riggs, & Rantz 2001). These tors associated with nursing assistants in nursing homes workers are responsible for multiple tasks, such as assisting leaving their job and identified low job satisfaction and emo- in bathing, eating, and dressing; reporting changes in physi- tional well-being as the most prevalent reasons. Staff turn- cal symptoms; and caring for the psychosocial needs of the over, in turn, negatively affects the nursing homes ability to resident (Anderson & Gaugler, 2007). Their workload is provide high-quality care. Recruitment and orientation of heavy, the resident-to-care worker ratio is high, and there is a new staff is time-consuming for managers and costly to the great attention focused on the completion of care tasks organization. In the palliative care field, lack of support for (Anderson, 2008; Sharkey, 2008). In addition, LTC homes staff grief and bereavement has been shown to contribute to are being required to take on a prominent role in end-of-life compassion fatigue, burnout, and poor retention (Showalter, care (McClement, Wowchuk, & Klassen, 2009) and thus are 2010; Slatten, Carson, & Carson, 2011; Vachon, 1995). One assuming many hospice-like functions. These conditions are strategy to improve staff satisfaction and potentially improve the context in which LTC staff currently work. staff retention in LTC homes is to provide a more supportive Marcella and Kelley 3 workplace that includes effective organizational strategies to et al., 2003). Literature shows that LTC workers do not feel help staff manage their grief and loss. supported in sharing their grief at work due to the lack of time and heavy workload, and thus they bring their grief home (Kaasalainen, Brazil, Ploeg, & Martin, 2007). Direct Care Workers’ Relationship With LTC To maintain their overall well-being, staff need to work Residents and the Impact of Their Grief through the grieving process to arrive at a healthy resolution with the client’s death (Brunelli, 2005). Anderson, Ewen, The relationships that are formed between LTC staff and and Miles (2010) found that health care aides who perceived residents are significant. Direct care workers perform duties their feelings of loss were validated experienced greater that have a high level of social and physical contact with resi- growth from the loss. LTC organizations may therefore want dents; subsequently, the relationships they form with resi- to consider the impact that unresolved grief can have on their dents are deeper than those formed by other health care employees, and recognize the benefit of providing grief and professionals (Anderson & Gaugler, 2007; Black & loss support to their staff. In examining how grief can be Rubinstein, 2005). The close bonds that are formed allow managed, Durall (2011) suggests the “the culture of silence” direct care workers to learn about the life experiences of the that surrounds the grief and loss needs to be broken. Creating resident, gauge residents’ emotional responses, and detect a work environment where staff are able to express their early changes in their physical condition. This information is grief, work within a supportive clinical team, and create a critical in providing holistic care for residents and their fam- meaningful context in which to place death are all identified ily (McClement et al., 2009). ways in managing grief (Burack & Chichin, 2001; Durall, Given the level of care provided and the relationships that 2011). develop between residents, their families, and direct care In summary, the LTC environment provides the context in workers, it may not be surprising that staff often view these which the grief and loss of staff are experienced and need to relationships with residents as familial. A metaphor of “fam- be managed. As more residents remain in LTC during the end ily like” or that residents are “extended family” has often of life, the direct care staff face the challenge of coping with been used by staff (Black & Rubinstein, 2005; Moss, Moss, these deaths. The relationships that are formed between staff Rubinstein, & Black, 2003; Rickerson et al., 2005; Sims and residents are close bonds, and thus the loss and bereave- Gould et al., 2010). When residents are considered like fam- ment needs recognition and support. Close emotional rela- ily, the emotional attachment may provide staff with a feel- tionships form the foundation of compassionate, ing of being appreciated and cared for by the residents well-informed quality care, specifically the kind of care that (Burack & Chichin, 2001), and for many residents, these for- is necessary in providing good palliative care. Therefore, it is mal caregivers become surrogate families (Rickerson et al., important for LTC homes to provide grief and bereavement 2005). support for their staff, and ensure that staff ’s health and well- Research has identified that the closer the staff–resident being are considered equally as important as the care of the relationship, the more intense the grief experience (Anderson older adults for whom the LTC environment is designed. & Gaugler, 2007; Durall, 2011). Individuals who deal with Supporting staffs’ grief may also contribute to improving death as part of their work, such as in LTC, need to find a retention of staff by enhancing their feelings of satisfaction way to make sense of death and dying. There is also evidence and emotional well-being. in the literature that how staff manage their strong grief reac- tions has an impact on resident care. Moss et al. (2003) state that emphasizing self-control over the expression of feelings Method can result in staff detaching from residents, especially when there is an expectation for staff to emotionally distance them- The overall purpose of this study in LTC homes was to selves to carry out their work duties efficiently. Van-Hein understand direct care workers’ experiences of grief and loss Wallace (2009) states that nurses may hesitate asking for related to the death of residents, their support needs, and emotional support for fear of being considered unprofes- their perception of the role the organization should play in sional or unable to work in a highly emotional workplace. supporting staff with these losses. The following research This perceived expectation of emotional distance reinforces question was used to guide the study: an organizational culture of denial and silence around death and dying in LTC homes. Research Question: What supports do LTC staff want Given the lack of support, time, training, and opportunity and need in the workplace to help them manage their grief to manage grief in the workplace, it may not be surprising and loss when residents die, and how are these best that direct care workers believe that they are expected to just offered? “deal with it” when it comes to managing grief (Brunelli, 2005; Burack & Chichin, 2001). This belief may lead care This research addresses an identified gap in the literature staff to maintain a culture where death of a resident is struc- as previous research has not concentrated on the impact of tured to have a minimum impact on the work at hand (Moss grief on direct care workers in LTC settings. These findings 4 SAGE Open can provide the organization valuable directions to create The interviews began by asking the participants to gener- strategies and policies to promote workplace wellness, which ally describe the extent to which grief is an issue for staff include supporting staff grief. The outcomes of this research working directly with residents. Participants were then asked have been incorporated into the QPC-LTC Alliance’s frame- how the death of a resident affects them emotionally. The work and toolkit that are available to guide developing pal- interviewer explored more specific interpersonal factors such liative care in LTC homes (see www.palliativealliance.ca). as the coping strategies used by each participant and how the This exploratory research used a qualitative approach to workplace environment supports them through the grieving understand the experiences and perspectives of nurses and process. Participants were also asked to comment on how the PSWs who work in two faith-based non-profit care homes in workplace can better assist and improve support services. Thunder Bay, Ontario. The first home, built in 1979, pro- vides specialized nursing care to 110 residents, and it offers Data Analysis a palliative care room for residents’ and families’ privacy. The second home opened in 2004 and accommodates 96 The interviews were audio taped and transcribed verbatim by residents. A unique feature of this home is in its construction the research assistants (RAs). All transcripts were then made and design, providing each room with a view of an outdoor available to all RAs to review. A three-level process of ana- space. lytic induction (Huberman & Miles, 1994) was used to Ethics approval was obtained from Lakehead University reduce the data into four overarching categories that together and St. Joseph’s Care Group. portrayed a complex picture of the staff’s experience and support needs related to grief, loss, and bereavement. To ensure rigor, a process of peer review occurred among eight Participants researchers at each level of analysis. Consensus was reached A purposive sampling technique was used to recruit nine on the evolving analysis. staff members who represented all three categories of LTC RAs initially independently coded the transcripts manu- direct care workers: RNs, registered practical nurses (RPNs), ally to identify all participants’ ideas. Sitting as a group with and PSWs. Participants were recruited by two PSWs who the senior researcher, the ideas were systematically com- worked in the study site homes, each working in one of the pared and discussed, and the themes were agreed upon. LTC homes. They selected and invited staff who they per- Discussion continued at four weekly 3-hr meetings until ceived to be knowledgeable informants for the study purpose agreement was reached that the analysis fully and accurately to participate in the research. These two PSWs were well represented the participants’ narratives. respected and well known by all of the LTC staff. Nine par- During the analysis meetings, initial ideas were grouped ticipants volunteered for the study who had extensive experi- into 38 (Level 1) themes according to their common features ence caring for dying residents and spent the majority of and meanings. These themes were then grouped into 12 their working time providing direct care to residents. (Level 2) explanatory themes and finally into four overarch- Participants included one RN, one RPN, and seven PSWs. ing (Level 3) categories. The categories were created induc- All participants were female, ages ranging from 20 to 54, and tively to explain the Level 2 themes and informed by the all with more than 3 years of experience working in LTC. purpose of the research. At each level of coding, the emerg- The majority of the LTC staff in the study sites were female, ing themes and categories were displayed on the wall using and no males volunteered for the study. However, the absence concept maps. These concept maps are included in the of male staff in the sample was a limitation of the study. description of the findings. Results Data Collection The grief and bereavement experience and support needs of Individual semi-structured interviews were used to collect LTC direct care workers can be understood through four data. All interviewers were trained graduate students in the overarching categories: (a) organizational context influences Master of Social Work(MSW) program at Lakehead staff’s experience of grief and loss, (b) the burden of grief, University, Thunder Bay, with each student conducting one (c) the emotional impact of grief, and (d) grief support needs interview, using an interview guide. The location of the inter- of direct care staff. Each category has a number of themes view was selected by the participant, and the interviews and sub-themes that are supported by direct quotes from par- lasted from 30 min to 1 hr. The meetings all occurred in loca- ticipants that are taken from the data. tions that allowed confidential conversation, such as at the workplace in a meeting room, in the public library meeting room, or in the participant’s or interviewer’s private home. Organizational Context Influences Staffs’ Interviews were conducted in a conversational style. Open- Experience of Grief and Loss ended questions guided the interview yet allowed flexibility The organizational context is the first overarching theme that to adapt to the narratives emerging and areas of interest emerged from the data in understanding the grief process of raised by the participants. Marcella and Kelley 5 Figure 1. Organizational context of LTC influences grief and loss for direct care staff. Note. LTC = long-term care. EOL = end-of-life. direct care workers. The participants spoke about the work letting go and passing are used in place of dying or died. This environment and how this environment affects their grief idea is indicative of the lack of comfort within the organization experience. Several themes were identified: death is hidden, to explicitly name the events that are taking place when it there is no training to prepare staff for loss, death is part of comes to the dying process. Participants often stated, “So the job, and there is a silent culture that exists around dying. when she left, like when she passed away . . . ” or “If I am hav- A thematic diagram, depicting the category, theme, and sub- ing trouble with somebody just passing . . . .” These statements themes, is included in Figure 1. all make reference to death, without actually using the word. Participants identified that no formal notification to resi- Death is hidden within the LTC culture. The organization attempts dents and support staff about a resident’s death exists in the to create a home-like setting for residents, and death is not home. Residents will ask staff about other residents who explicitly incorporated into the culture. The participants identi- have died; however, this information is not provided due to fied the theme that death is hidden from the residents and from the misperception of many staff that confirming that a resi- direct care staff, including those not providing direct care such dent has died is a breach of confidentiality. There is no as dietary staff. Staff elaborated that there is little communica- immediate formal service or ceremony within the homes that tion about death although there are informal and unofficial would inform residents of a death, although there are memo- pathways of communication within the homes. Staff may learn rial services held twice a year. Death is also hidden from of a resident’s death informally through coworkers or outside other support staff such as dietary or housekeeping as there is community sources. The responsibility to obtain information no formal process of notification in place. The following rests with the staff member as illustrated in the following quote: quotes provide evidence of how death is hidden: I was off for three days and I walked off the elevator and never When they die, their tag from outside their room goes on the “in noticed that her name was on the board, but she’d passed . . . and memoriam” board. So that’s how they officially know that the in the middle of report I was . . . “you know this bed’s empty” person is dead . . . that’s it, they don’t have a little announcement . . . it’s like hold it, what happened here? (PSW) or a moment at breakfast . . . . (RPN) The participants indicated that explicit language around You know it really affects them [residents]. Like you can have death does not exist. When staff refer to death, the terms four people at a table every day for dinner, breakfast, lunch, and 6 SAGE Open then that person’s not there . . . so all of a sudden there’s a new environment where death is a common occurrence. Partici- face at the table. (PSW) pants identified that there is an established hierarchy of emo- tional engagement between staff and the residents, depending No training to prepare staff for loss. Participants identified that on their professional role. This hierarchy begins with the there is no training to prepare staff for loss of a resident, nor PSWs at the bottom, and works up through the RPNs to the is there any information given with regard to available sup- RNs, and then to managers. The participants’ perception is ports and resources when experiencing grief. They stated that the emotional burden of grief decreases the higher the that during the orientation process there is no discussion staff member is on the professional hierarchy. Evidence of around the prevalence of death. The purpose of orientation this perception is demonstrated with the following quotes: was to prepare staff for their role within the organization and to give them an opportunity to ask questions. However, the . . . there’s support . . . not from the managers so much . . . I don’t think that it’s intentional . . . they have their own things that they focus of management in training initiatives centers on direct worry about . . . I think because they don’t have as much care practice, and not on grief and loss. The lack of discus- interaction with the clients as we do . . . that’s not one of their sion identifying the prevalence of death does not give staff a priorities. (PSW) chance to inquire about death or provide staff an opportunity to ask about the resources available to them. The following . . . we’ve always approached each other, “how are you doing?” gives evidence: or “are you doing ok?” . . . I’ve never seen an RPN, RN, or management come up to a worker and say “are you ok?” and There’s nothing that I’m aware of that’s in place . . . it is bad “are you going to be attending the funeral?” . . . I have never because I think even with orientation as a new employee you seen anything like that. (PSW) should be told what you can do, and there’s nothing that I’m aware of that’s even in place. (RPN) There are many expectations placed on staff to provide emotional and informational support to the resident, as well Participants stated that they learn how to manage grief as their family. However, resources do not match role expec- “on the job,” primarily by observing others and monitoring tations. Participants identified that there is nothing in their reactions from them. In particular, when new staff are trying training to prepare them for the supportive role, and the to integrate into the existing culture, they learn from more resources available within the home such as pamphlets and experienced workers. The informal relationships among guidelines do not support the staff with this expectation. staff, in trying to help one another cope with the demands of Furthermore, the lack of time, the demand to complete tasks, the workplace, are integral to the culture in LTC. There are and the lack of emotional support offer little comfort to staff no written procedures to cope with grief; rather, it is the rela- with their own grief experience. This idea is illustrated with tionships developed among staff that guide others through the following quote: the process. This idea was spoken of several times: So it’s always the staff, the staff helping the staff which isn’t bad, but if you don’t have the training you know how do . . . there’s a lot of knowledge, like even approaching family and you help someone through that [grief] (RPN). dealing with families and as new people come into the home . . . they get watched lots by the older staff . . . that’s how I learn too Participants indicated that they have close relationships . . . my older staff and how they deal with people . . . . (PSW) with residents and their families, and they are accustomed to seeing families regularly. However, once a resident dies and Our senior staff . . . they’ve been around a long time . . . they’re the room is cleared of the body and possessions, this relation- the ones that are teaching us how to deal with everything. (PSW) ship with the family abruptly ends. Participants identified an emotional loss of both resident and family; there is no oppor- Participants indicated that communication with residents tunity to express their grief over the loss of these relation- and their families is difficult; however, it is an important part ships, just expectation to carry on with the job. These multiple of their role, and these skills require education. They are fre- losses result in an emotional burden for the care providers. quently asked questions about death and dying by family and The following quotes demonstrate staffs’ multiple losses and residents. Participants stated that they are often uncomfort- the emotional burden: able and feel unprepared to respond to difficult questions. Staff were aware of bereavement pamphlets for family but They’re all very important to me . . . I’ve pronounced many, I’ve identified that sending family off to talk to someone else felt seen a lot in my life . . . we’ve just lost six in the last few months impersonal. . . . it was pretty hard, we hadn’t grieved yet . . . I lost track now. (RN) Death is part of the job. Participants have an implicit under- standing that managing residents’ death is part of what they Because what happens is they become our family, like you get close, you see them every day and all of a sudden it just stops. do. This understanding does not come from open discussion (RPN) or instruction; it comes from the experience of working in an Marcella and Kelley 7 Silent culture exists around dying. PSWs identified that there death is part of the LTC environment, they expressed diffi- are many unwritten rules and implicit expectations around culty with experiencing death on a regular basis. Evidence the delivery of care that guide practice and help staff in cop- supporting this notion is given with the following quote: ing with the demands of work. This silent culture assists They’re [deaths] all hard to deal with . . . even though you do a them to meet the expectations placed on them by manage- lot of it, you still have a hard time . . . doesn’t matter how many ment. There is an understanding among staff that death is you’ve looked after or dealt with. (PSW) part of the nursing culture. The significance of this under- standing emerges as staff strongly believe that during the Participants spoke about managing emotional attachment dying process the residents are not to be left alone in their and detachment. They have dual responsibility to effectively rooms. There should always be someone present, especially attach to residents in an effort to provide what they describe if there is no family around. Staff hold one another account- as quality care, while they must be able to detach when the able to provide comfort to the dying client. The following resident dies to carry on with their routines. This idea is quotes support this idea: described with the following evidence: We are here for a reason and the reason is for the end of life. I guess we’re just expected to be strong and we just have to . . . (PSW) accept that it’s gonna happen . . . we’re always getting new people in afterwards right? So we just have to keep going. (RPN) She died [with no family], she was a ward of the state and she was by herself, and that’s what killed us the most . . . these Sometimes we have a resident that dies and two days later people that have no family, they need someone to represent there’s someone in that bed . . . and you’re learning all about them. And she died alone, but she was in her home, right? (PSW) somebody new and you haven’t actually grieved the loss of the last person. (RPN) Staff develop close relationships with residents and subsequently do not like to see residents suffer in any way. When death is As a result of feeling a lack of control over death, staff seek imminent, staff view it as a welcome end to the pain and ways to regain control through their work and relationships. suffering that the resident may be experiencing. At the same They recognize that everything they did for the residents and time, however, there is a sad emotional reaction to the loss of the their families had an impact. Through their proactive and relationship. In welcoming an end to the pain and suffering, staff positive actions, staff members are able to recover some of their acknowledged that giving the resident permission to let go is a lost control. The following quote supports this idea: I’m the one form of support for the resident and a form of closure for the who takes control, everybody else gets to cry. I don’t. I cry on staff. They view death of a resident as meaningful and sad. A my own, but with helping them I’ve helped myself. (RPN) participant shared her experience, stating: Staff use coping strategies to manage grief. Some of the par- I hate the part of watching them suffer. So once they go, you know it’s kind of a relief to some extent . . . I would never want ticipants reported that they do not feel sufficiently prepared somebody to stay alive and in pain. (PSW) to deal with the grief process in LTC. As a result, participants rely on their own personal coping strategies, which vary from person to person. A number of sub-themes emerged The Burden of Grief when staff spoke of these strategies. The importance of letting go of the resident is an experi- Grief is undeniably present in the LTC homes. It is also inev- ence shared by many participants. They clearly expressed the itable that staff develop relationships with residents as they importance of being present at the time of death to offer com- are providing not only physical care but also a continued fort to the resident and also to give themselves a comfort presence in a resident’s everyday life. Each staff member’s knowing the resident was not alone. By drawing on personal experience of grief is individualistic, with a complex set of experience, expressing love for the resident, and mentally personal and organizational circumstances affecting the grief preparing themselves for loss, staff members feel that they burden. Two themes are identified: no relief from grief and are better able to cope with the resident’s death, as expressed loss, and staff ’s coping strategies to manage grief. A thematic through the following quotes: diagram depicting the burden of grief is included in Figure 2. I spend time with them . . . if I want to sit and hold their hand No relief from grief and loss. The grief and loss are part of the . . . or talk to them . . . just doing care on them. Being there, nature of work that is done in LTC home, and the direct care letting them know that I’m here . . . it all helps. (RPN) workers learn to manage emotional detachment from resi- dents after their death. There is no control over death, and If you go in knowing you’re there to make them comfortable just staff learn individually to cope with the loss of residents. Par- until they pass away, then you mentally prepare yourself for it. ticipants explained that grief is a continual emotion that is It’ll still hurt, but you’re mentally knowing that person’s dying. I’m just here to make them comfortable till they’re gone. (RPN) embedded in the nature of the work that is done. Although 8 SAGE Open Figure 2. The burden of grief for direct care staff working in LTC. Note. LTC = long-term care. Participants noted that using humor is often necessary to a source of support and aid in staff’s coping with the loss manage work-related grief. Staff indicated that the work envi- when a resident dies. The idea of forming relationships is ronment would be depressing if they could not find some humor evidenced through the following quote: in their work. This idea is supported with the following quotes: It’s a family . . . you become part of the family when you work there . . . nobody’s really excluded. (PSW) Some of us are very good to each other . . . we are all laughing and goofing the vast majority of the time . . . it could be a really depressing place if you let it be, but I figure . . . I’m going to The Emotional Impact of Grief work for like eight hours a day every day of my life . . . I want to be happy while I’m there. (PSW) Participants were able to describe the emotional impact that grief has on them. Two themes emerged from the data: there He hadn’t conversed with anybody or said anything . . . and we are no formal organizational processes to handle their grief, thought there’s no way this guy’s going to sing. Oh we started and participants’ coping strategies to manage the grief. A the- singing “Happy Birthday” and he sang along with us . . . it was matic map, illustrating the emotional impact of grief, is hilarious. Oh it was funny . . . humor and bad singing. (PSW) shown in Figure 3. Participants indicated the significance of creating meaning No formal organizational process to handle grief. Participants around a resident’s death. This meaning is constructed by clearly indicated that there is no organizational process avail- focusing on the value of the lived life of the resident, bringing able to address their grief experience. When a resident dies, attention to what the resident brought into the LTC facility, and the contribution the resident made to the lives of staff who cared there is no formal opportunity for closure. The participants for him or her. The importance of creating meaning is illustrated are expected to carry on with their tasks, without any formal below: acknowledgment that the residents’ death may have an impact on them. The following quotes illustrate this: If it’s an 80 or 90 year old and you think about all the things they’ve accomplished in their life, I just find it so much easier to I went home crying [after a resident died]. You know, there was get over it. It doesn’t bother me as much. (RPN) no one to talk to, no one to vent nothing. It was just “oh my gosh, this woman just died today and we didn’t say nothing and there Participants pointed out that the relationships that are was nothing for us.” (PSW) formed in LTC among staff, residents, and family are essen- tial to managing their grief experience. The relationships She passed away last week . . . she’s got no funeral, no nothing and it’s really, really hard. How can we have closure for that were often described as being family-like bonds that provide Marcella and Kelley 9 Figure 3. The emotional impact of grief on direct care staff in LTC. Note. LTC = long-term care. lady? It’s sad . . . we don’t have a funeral for her, we don’t have experiencing grief at the same time. Each participant spoke anything in place at work other than us talking about her and of witnessing other coworkers struggling emotionally fol- talking about the little funny stories. (PSW) lowing the death of a resident, and this often has the effect of staff pushing aside their own grief to support their fellow The meaningful relationships that exist with residents coworker. Evidence of this idea is given with the following also exist with the resident’s family. When residents die, staff quotes: members lose not only the resident but also the relationships formed with family members. This multiple loss experience You can see that they’re in pain and the suffering from the. . . . was mentioned on several occasion and evidenced by the fol- partner, you can kind of see it in their eyes . . . so we support her. lowing quote: (RPN) The full time staff that are there 5 days a week . . . really get to I graduated two years ago . . . they [school] deal with death and know the residents well . . . and the families as well. So when dying . . . the breathing slows down, the organs shut down, they someone passes, it affects them quite a bit. (RPN) deal with the book, they don’t deal with the life. They don’t say okay . . . you’re going to see families be hysterical . . . you have to let them grieve their way and you have to be there to try and It was explained that given the relationships formed with support them if you can. (PSW) residents, it is sometimes easier to deal with the death of a resident when staff is not working at the time. Being present Coping strategies to manage grief. Participants identified a at the time of death can be difficult, and reading about it in number of factors that have an influence on how grief is the paper at a later date is sometimes easier. This was evi- experienced in the LTC setting. This theme has a number of denced when a participant stated, supporting sub-themes that emerged from the ideas in the data. I feel that when you’re away from the facility, you don’t have Participants described that there are different grief reac- that much of an emotional connections with them as when you’re right there beside them and you’re watching them. (RPN) tions among staff, and these reactions vary according to their work and personal experience. Self-reflections by staff about Despite their own emotional struggle over the loss of a the value of their role also appear to play a critical role in resident, participants identified the importance of offering how a resident’s death is experienced. Some participants support to family who are grieving the loss of their loved self-reflected, stating that their work role of caring for those one. There is also an awareness the colleagues may be who are dying helped make the life of the residents well lived 10 SAGE Open and as comfortable as possible. This view provides comfort within these relationships that influence the experience of to the staff as evidenced through the following quotes: grief. This is supported with the following quotes: If I can make a difference, that’s what life’s about. If you make There are some hard ones. There are some hard deaths . . . not to a difference in somebody else’s life, then that is what I’m here say you have your favorites, but you do have favorites. So you for. I’m here for that, for sure. (RPN) have people that you really get to love in a way. (PSW) Being comforting to the other person, that was my strategy, that The staff are very sensitive to their care because we have had was my coping strategy, knowing that I could be comforting for most of the residents that pass away or on their way out, have somebody else. (PSW) been with us for many years. Sometimes it’s almost like their part of them, family wise . . . if they see them any which way in distress while at the end of life, they get very upset and they However, participants described that the lack of personal come to us right away. (RN) experience with death influences how staff would process the event. Many staff beginning employment in LTC have The support staff offer to one another appears to be inte- not witnessed a death or experienced a loss through death. gral to the strength and resiliency displayed among partici- The following quote provides evidence to this sub-theme: pants in managing their grief experiences. Participants described the importance of camaraderie when death occurs; Some people don’t know how to grieve. Some people are they turn to one another to find support for their grief. If the working in long term care and maybe they haven’t really lost somebody close to them so they really don’t know . . . how to support is not there, they take their grief home and seek out grieve or how their emotions are going. (PSW) support from family and friends. Participants identified that the circumstance surrounding Grief Support Needs of Direct Care Staff the death of a resident is a significant factor contributing to their grief reaction. If the death was described as a “good Participants were asked to suggest how their LTC workplace death,” where the resident was not alone, pain was managed, can better assist and improve grief support. They were very and the resident was comfortable, then staff were better able clear in stating that “something” needs to be put in place to to come to terms with the resident’s death. If the death was support staff with their grief and loss. The 4 themes and 12 described as a “bad death,” whereby the resident appeared to sub-themes that emerged from participant data appear to be be suffering, pain was not managed, and the resident died manageable to implement in an organization and do not alone, then staff experience moral angst associated with that appear to require much in added resources or money: educa- death. Participants were strong in voicing the importance of tion, peer support during grief experience, formal supports, providing the resident with comfort, support, and presence at and established protocols after resident’s death. Much of the the end of life as this influences their perception of the resi- change relates to creating an organizational culture that dent’s experience, as well as their own grief experience. The acknowledges that LTC is a major site of death and that it has following quotes provide evidence for this sub-theme: consequences for staff who work there. A thematic map, demonstrating the overarching category, themes, and sub- We were all with him, they finally got the daughter on the phone themes, is found in Figure 4. and we were able to put the phone to his ear and that was the last thing he heard was I love you daddy and then he took his last Education needs. Participants identified that education is breath. And it was just, we were all there and it was really needed to support them not only in the palliative care work humble. It was just incredible to be there at that moment. (PSW) done in LTC but also with how to manage their own grief and loss. They acknowledged that new workers are often unpre- I felt it was a blessing in a way sometimes it’s a blessing that pared for managing the emotional experience of a resident they do go . . . if they lay there and suffer . . . she was suffering dying. It was indicated that if grief was talked about openly through cancer, the top of her head was cancerous and draining at orientation, it would prepare new staff for what to expect . . . you sometimes think it’s a good thing. (RN) and also provide them with information on who to contact if further support is needed. Some deaths are not so beautiful. (PSW) Participants stated that it would be helpful to have grief and bereavement information visibly posted on the floors. Participants identified that the issue of grief is deeply The workers are currently unaware of what resources are influenced by the nature of the relationship staff have with available for them, and where to refer families for grief and each of the residents and their families. They stated that bereavement support. It was suggested that cards or pam- although the care they provide may be uniform from resident phlets posted on bulletin boards would be helpful to those to resident, the interpersonal relationships they develop with seeking assistance. individuals are unique and variable. It is the differences Marcella and Kelley 11 Figure 4. Grief support needs of direct care staff in LTC. Note. LTC = long-term care. Peer support. Participants were very clear that the most ben- supporting staff with their grief and loss. They frequently eficial forms of support come from their own peers. Ideally, mentioned the importance of having some form of staff it should be peers guiding them through the grief process as debriefing right after or shortly after a resident had died. The the relationships they have established with their coworkers description of the preferred debriefing is to be short in length are comforting. Participants also talked about the importance as it was recognized that staff do not have time to leave the of mentoring younger staff on what to expect when a resident floor. It should be peer-led and provide staff a general oppor- dies, and how to say goodbye to a resident. The knowledge tunity to discuss what had happened. The following quotes of experienced staff is a credible source of support and com- give evidence for this idea: fort when dealing with the emotional challenges of working Even a monthly meeting or debriefing where we can all go and in a LTC environment. The following quote illustrates the say what we want to say about the person or . . . somewhere we idea of peers guiding peers: can go talk about the people that have passed . . . or just acknowledge that they were there, that they are gone and that Having fellow staff members to guide you through something they meant something to us, so that formally we can all meet and like that, I think that’s probably the best way to go through it. whoever wants to go can go. (PSW) (PSW) A debrief, depending on the circumstance of the death, or the Participants stated that talking about the resident after his passing of the resident, because some of them are, well some or her death is an important way of memorializing that per- of them are beautiful and some of them are not so beautiful. son. Reminiscing about the resident enables staff to come to (PSW) terms with the loss of the resident. It also brings meaning to the care staff provided as it is important for workers to feel Participants identified that there is one spiritual care advi- the care given was appreciated and meaningful. The follow- sor who is shared between the two LTC homes involved in ing quote expresses this idea: the study, and it would be beneficial for both homes to receive equal time. However, they recognize that this is dif- Well sometimes at the nurses’ station . . . we will talk about it ficult to accomplish and the demands in both facilities need when it’s in private . . . we’ll talk about the individual and sharing, attention. Ideally, having a social worker on premises to you know, good things about the person, and people laughing a assist with family concerns outside the scope of health care little bit, and if somebody wants to cry, they can cry. (PSW) staff practice would be helpful. The two LTC homes in this study did not have social workers and this was a perceived Formal support for grief and loss. Participants identified sev- need by the participants. eral key areas in which the organization can take the lead in 12 SAGE Open Participants stated that they have rarely experienced man- the need for a protocol to support residents and family mem- agement acknowledgment of the impact that a resident’s bers when death occurs. The following quotes demonstrate death has on staff. They find managers generally caring, and this: they recognize the demands of the management role. Because you’re not going to push off someone who is crying and However, participants stated that “it would be nice” if a man- grieving, and just be like, “no I’m sorry I have to go” . . . they ager would proactively and explicitly acknowledge staffs’ need someone that would listen to their concerns. (RPN) feelings after a resident had died and ask whether there is anything that a staff member may need. Once this individual passed, I really expressed my feelings Currently, there is an informal process used among staff towards the caregiver . . . how much we, how much I enjoyed to communicate when a resident dies. Participants contact them, him, the person . . . and if there’s anything I can do. (PSW) one another via cell phone or text to notify one another of a resident’s death. This system works well for some staff, but as this is an informal and non-systematic process; some peo- Discussion and Implications ple may be left out of the notification. Participants identified The results of this study demonstrate the complexity of direct that it is helpful to be aware of a death, instead of learning care workers’ experience with grief and loss in LTC. These about it on shift report or from the announcement that a new staff are faced with the presence of grief on a daily basis, resident has moved into that room. Knowledge of a death with a number of factors influencing how their grief is man- helps them emotionally prepare for the loss and avoids unex- aged. Although a limitation to the study was a small number pectedly receiving the news, as illustrated in the quote below: of participants working in two LTC homes, the data are rich, If it’s report when we walk in and . . . so and so passed away and the findings are supported by other literature. This . . . if you’re off for a couple of days, you know it’s like What? research expands knowledge on the impact that a death of a . . . There isn’t anything specifically in place for it. (PSW) resident has on the LTC staff, and identifies clear strategies that can assist in developing organizational policies and Protocol after resident death. Participants identified a need for practice to support the health and well-being of their staff. acknowledging each resident’s death within the home. Spe- The organizational context of LTC clearly influences the cific ideas that would support staff’s grief process have experience of grief and how it is managed. The lack of a emerged from the data. A memory tree with residents’ names formal policy and support strategies can be seen as an on it and an annual Christmas tree decorated in memory of implicit policy not to recognize death and its impact on the past residents are suggestions that staff feel would memorial- organization. The silence surrounding the death and dying in ize residents with greater meaning. LTC and lack of acknowledgment that staff are affected by Participants noted that the home holds celebration ser- the loss of residents they care for deny staff the opportunity vices on an annual basis; however, it was felt that with the to process and move through their grief. large number of residents dying each year, an annual service The findings of this study are supported by other similar is not enough. The celebration services need to be held research that validates this work. In Durall’s (2011) study, sooner in recognition of residents’ death. In addition, imple- the key variables that affect the grief experience of health menting an established ritual immediately after the resident care professionals are identified, arguing that the silent cul- has died would also support staff in their grief process. The ture around death needs to be broken to encourage the healthy following quotes support staffs’ desire for a ritual: expression of grief in the work environment. The study by Burack and Chichin (2001) explored nursing assistants’ feel- I just think it would be nice if there was something that even in ings, experiences, and needs when providing care for the your own private time we could even go in there for two minutes dying, and found that even though nursing assistants were and think about that resident that they took care of. You know I taught the mechanical components of the job, staff were not think that would be nice. (RPN) informed about the emotional involvement and responses to the dying. The same findings were obtained in the study pre- There’s got to be something out there and I think just the chance sented here as participants indicated that they had no training to express yourself . . . what is a funeral, it’s somebody talking to prepare them for the losses they inevitably encounter. about this person that they love . . . or respected . . . or was close Thus, care workers rely on one another and learn “on the to and it just gives people a chance to say good-bye. And we job” when it came to managing their grief and loss. Even don’t do that . . . it’s a horrible feeling when you don’t get that chance to say good-bye. (PSW) without training, participants acknowledged that death is part of the job; they are faced with the emotional burden of mul- Participants acknowledged the importance of recognizing tiple losses, of both residents and residents’ families with the impact a resident’s death has on other residents and fam- whom they have formed relationships. ily members. They indicated that not having time to sit with Study participants noted that there is a burden with grief, other residents, or inform them that a death had occurred, is and grief and loss are embedded in the nature of the work emotionally difficult and “not fair.” Participants recognized done in LTC. They learn how to emotionally detach from Marcella and Kelley 13 residents when a death occurs; however, they must learn to 7. Implement organizational strategies and rituals to reconnect to new residents being admitted to LTC and remain acknowledge all residents who die in the LTC home. emotionally attached to other residents they are providing Examples include creating a memory tree, having a care to. Similar findings have been identified in Burack and regular memorial service or ceremony, or conducting Chichin’s (2011) research, where nursing assistants expressed a room blessing. difficulty adjusting to the fact that the bed is filled immedi- 8. Support staff with the time and resources to reach out ately after a resident’s death, with no time for staff to mourn, to residents and staff after the death of a resident to and the difficulty in beginning a new relationship so soon acknowledge their grief and loss. This not only sup- after the loss, knowing that the painful process will be ports others but also promotes a sense of completion repeated. A finding, not previously identified in the literature for staff, aiding in the resolution of grief. but presented here, is the existence of many unwritten and implicit rules that guide staff in the delivery of care for dying Many of these strategies are examples of innovation from residents and their families. For example, participants spoke within the home, requiring little in the way of cost or external of a strong belief that residents should not die alone. Thus, in resources. Involving direct care staff in the development and the absence of explicit organizational policy to guide them, implementation of these strategies is an effective way to staff learn through mentoring, use personal life experience, address their support needs related to grief, loss, and and experience on the job. bereavement. Previous research has recommended innovation in look- ing at ways to improve palliative care provided by LTC Conclusion (Brazil et al., 2004). In this study, participants offered not only innovative but also practical strategies on how direct The direct care workers’ experience of grief and loss is com- care workers can be better supported. Thus, the findings of plex. LTC staff are continually faced with the presence of this study have implications for the development of policy death, with a number of factors influencing how their experi- and procedures in LTC homes. The following recommenda- ence with grief is managed. Currently, there are no formal tions for managers in LTC homes emerged from the study organizational processes in place to assist staff with handling findings: their grief; this situation compels them to rely on one another for support. Direct care workers are in the best position to 1. Implement a regular program of palliative care edu- identify the support and resources they need to manage their cation for staff, including strategies for managing grief and loss. A formal process for supporting grief and loss their grief and loss. Education needs to occur at ori- in the work environment is needed as a component of a holis- entation of new staff and routinely for all staff tic and inclusive palliative care program in LTC settings. thereafter. This may also contribute to staff satisfaction and ultimately 2. Make information visible and accessible to staff for retention. both their own use and to offer as support for bereaved It is hoped that this research will assist in the development families, for example, pamphlets about grief and and implementation of organizational policy and procedures, where to access counseling resources. addressing the health and well-being of direct care workers 3. Recognize the benefits of informal peer support in in LTC homes. As LTC homes increasingly provide pallia- LTC and the value of experienced staff mentoring tive care as a core part of their services, death becomes part inexperienced staff, especially where staff have no of the job of direct care workers. Staff need education and previous experience of death and dying. Acknowledge support to manage their grief and loss to provide quality pal- and value the staff mentors. liative care. The culture of LTC must evolve to explicitly 4. Encourage staff to reminisce about residents after acknowledge that resident care is provided until the end they have died and let staff know that the end-of-life of life. Eight strategies were provided to assist in this care they provided to the resident is valued and evolution. meaningful. 5. Implement organizational procedures to support staff Acknowledgments dealing with grief and loss, for example, holding The author(s) would like to acknowldege and thank the following peer-led post-death debriefings after every death, fre- Research Assistants for their contribution with data collection and quent memorial services, and always acknowledging analysis: Sue Foster, Denise Groves, Stephanie Hendrickson, staff’s feelings of loss when a resident dies. Benjamin Mireku, Robert Sleeper, and Michelle Uvanile 6. Implement effective organizational communication systems to share knowledge of a resident’s death in a Declaration of Conflicting Interests timely way with all staff. Such methods could include issuing an email to all staff or creating bulletin The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. boards. 14 SAGE Open Funding Froggatt, K. A., Reitinger, E., Heimerl, K., Hockley, J., Brazil, K., Kunz, R., . . . Morbey, H. (2013). Palliative care in long-term The author(s) disclosed receipt of the following financial support care settings for older people: EAPC taskforce 2010-2012 for the research and/or authorship of this article: This research was report. European Association for Palliative Care. Retrieved supported by the Canadian Social Sciences and Humanities from www.eapcnet.eu/Themes/Specificgroups/Olderpeople/ Research Council (SSHRC) through the Community University Longtermcaresettings.aspx Research Alliance program and the Canadian Institutes of Health Hall, S., Kolliakou, A., Petkova, H., Froggatt, K., & Higginson, I. Research (CIHR FRN:112484). J. (2011). Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database of References Systematic Reviews, 3, CD007132. doi:10.1002/14651858. Anderson, K. A. (2008). Grief experiences of CNAs: Relationships CD007132.pub2 with burnout and turnover. Journal of Gerontological Nursing, Hirdes, J. P., Mitchell, L., Maxwell, C. J., & White, N. (2011). 34(1), 42-49. Beyond the “iron lungs of gerontology”: Using evidence Anderson, K. A., & Ewen, H. H. (2011). Death in the nursing home. to shape the future of nursing homes in Canada. Canadian Research in Gerontological Nursing, 4(2), 87-94. Journal on Aging, 30, 371-390. Anderson, K. A., Ewen, H. H., & Miles, E. A. (2010). The grief Huberman, A. M., & Miles, M. B. (1994). Data management and support in healthcare scale: Development and testing. Nursing analysis methods. In M. B. Miles & A. M. Huberman (Eds.), Research, 59, 372-379. Qualitative data analysis: An expanded sourcebook (2nd ed., Anderson, K. A., & Gaugler, J. E. (2007). The grief experiences of pp. 428-444). Thousand Oaks, CA: SAGE. certified nursing assistants: Personal growth and complicated Kaasalainen, S., Brazil, K., & Kelley, M. L. (2012). Building capac- grief. OMEGA, 54, 301-318. ity in palliative care for personal support workers in long term Berta, W., Laporte, A., Zarnett, D., Valdmanis, V., & Anderson, G. care through experiential learning. International Journal of (2006). A pan-American perspective on institutional long-term Older People Nursing, 9(2), 151-158. care. Healthy Policy, 79, 175-194. Kaasalainen, S., Brazil, K., Ploeg, J., & Martin, L. S. (2007). Black, H. K., & Rubinstein, R. L. (2005). Direct care workers’ Nurses’ perceptions around providing palliative care for long- response to dying and death in the nursing home: A case study. term care residents with dementia. Journal of Palliative Care, The Journals of Gerontology Series B: Psychological Sciences 23(3), 173-180. & Social Sciences, 60(1), S3-S10. Kagan, S., & Stricker, C. (2010). Symptom management. Journal Brazil, K., Kaasalainen, S., McAiney, C., Brink, P., & Kelley, M. L. of Gerontological Nursing, 36(11), 3-6. (2012). Knowledge and perceived competence among nurses Kelley, M. L., & McKee, M. (2013). Community capacity devel- caring for the dying in long-term care homes. International opment in participatory action research. In J. Hockley, K. Journal of Palliative Nursing, 18, 77-83. Froggatt, & K. Heimerl (Eds.), Participatory research in pal- Brazil, K., Krueger, P., Bedard, M., & Kelley, M. L. (2006). liative care: Actions and reflections (pp. 40-52). Oxford, UK: Quality of care for residents dying in Ontario long-term care Oxford University Press. facilities: Findings from a survey of directors of care. Journal McClement, S., Wowchuk, S., & Klassen, K. (2009). “Caring as if it of Palliative Care, 22(1), 18-25. Brazil, K., McAiney, C., Caron-O’Brien, M., & Kelley, M. L. were my family”: Health care aides’ perspectives about expert (2004). Quality end-of-life care in long-term care facilities: care of the dying resident in a personal care home. Palliative & Service providers’ perspective. Journal of Palliative Care, Supportive Care, 7, 449-457. 20(2), 85-92. Moss, M. S., Moss, S. Z., Rubinstein, R. L., & Black, H. K. (2003). Brunelli, T. (2005). A concept analysis: The grieving process for The metaphor of “family” in staff communication about dying nurses. Nursing Forum, 40, 123-128. and death. The Journals of Gerontology Series B: Psychological Burack, O. R., & Chichin, E. R. (2001). A support group for nurs- Sciences & Social Sciences, 58, S290-S296. ing assistants: Caring for nursing home residents at the end life Ontario Ministry of Health and Long-Term Care. (2007). Long- (CE). Geriatric Nursing, 22, 299-307. Term Care Homes Act, 2007. Retrieved from http://www.e- Canadian Hospice Palliative Care Association. (2013). A model to laws.gov.on.ca/html/statutes/english/elaws_statutes_07108_e. guide hospice palliative care. Ottawa, Ontario: Author. htm Canadian Institute for Health Information. (2012). Data quality Parker, D. (2013). The national rollout of the palliative approach documentation, Continuing Care Reporting System, 2011- toolkit for residential aged care facilities. Retrieved from 2012. Ottawa, Ontario: Author. http://www.uq.edu.au/bluecare/the-national-rollout-of-the-pal- Churchill, J. (1999). Grief: A normal response to loss. Home Health liative-approach-toolkit-pa-toolkit-for-residential-aged-care- Care Management Practice, 11(6), 1-3. facilities Durall, A. (2011). Care of the caretaker: Managing the grief process Ramsbottom, K., & Kelley, M. L. (2014). Developing strate- of health care professionals. Pediatric Annals, 40(5), 266-273. gies to improve advance care planning in long term care Fisher, F., Ross, M., & MacLean, M. (2000). A guide to end-of- homes: Giving voice to residents and their family members. life care for senior. Toronto, Ontario, Canada: University of International Journal of Palliative Care, 2014, Article ID Toronto. Retrieved from http://rgp.toronto.on.ca/PDFfiles/eol- 358457. doi:10.1155/2014/358457 english.pdf Rickerson, E. M., Somers, C., Allen, C. M., Lewis, B., Strumpf, Froggatt, K. A. (2001). Palliative care in nursing homes: Where N., & Casarett, D. J. (2005). How well are we caring for care- next? Palliative Medicine, 15, 42-48. givers? Prevalence of grief-related symptoms and need for Marcella and Kelley 15 bereavement support among long-term care staff. Journal of of Industry. Retrieved from http://www5.statcan.gc.ca/bsolc/ Pain and Symptom Management, 30, 227-233. olc-cel/olc-cel?catno=83-237-XIE&lang=eng#formatdisp Riggs, C. J., & Rantz, M. J. (2001). A model of staff support to Stolley, J. (2010). Caring for hospitalized older adults. Journal of improve retention in long-term care. Nursing Administration Gerontological Nursing, 36(8), 3-5. Quarterly, 25(2), 43-54. Travis, S. S., Bernard, M., Dixon, S., McAuley, W. J., Loving, G., Rosen, J., Stiehl, E. M., Mittal, V., & Leanna, C. R. (2011). Stayers, & McClanahan, L. (2002). Obstacles to palliation and end-of- leavers and switchers among certified nursing assistants in life care in a long-term care facility. The Gerontologist, 42, nursing homes: A longitudinal investigation of turnover intent, 342-349. staff retention and turnover. The Gerontologist, 51, 597-609. Vachon, M. L. S. (1995). Staff stress in hospice/palliative care: A Sanders, S., & Swails, P. (2009). Caring for individuals with end- review. Palliative Medicine, 9, 91-122. stage dementia at the end of life: A special focus on hospice Van-Hein Wallace, A. (2009). Supported nurses give better care. social workers. Dementia, 8(1), 117-138. Nursing Standard, 24(9), 54-55. Sharkey, S. (2008). People caring for people: Impacting the quality Wickson-Griffiths, A., Kaasalainen, S., Brazil, K., McAiney, C., of life and care of residents of long-term care homes (A Report Crawshaw, D., Turner, M., & Kelley, M. L. (2014). Comfort of the Independent Review of Staffing and Care Standard for care rounds: A staff capacity- building initiative in long-term Long-Term Care Homes in Ontario). Saint Elizabeth Health care homes. Journal of Gerontological Nursing, 41(1), 42-48. Care. Retrieved from http://www.health.gov.on.ca/en/com- doi:10.3928/00989134-20140611-01 mon/ministry/publications/reports/staff_care_standards/staff_ Wijk, H., & Grimby, A. (2008). Needs of elderly patients in pal- care_standards.pdf liative care. American Journal of Hospice & Palliative Care, Showalter, S. E. (2010). Compassion fatigue: What is it? Why 25, 106-111. does it matter? Recognizing the symptoms, acknowledging the Wowchuk, S. M., McClement, S., & Bond, J. (2007). The challenge impact, developing the tools to prevent compassion fatigue, and of providing palliative care in nursing homes, part 2: Internal strengthen the professional already suffering from the effects. factors. International Journal of Palliative Nursing, 13, 345-350. American Journal of Hospice & Palliative Care, 27, 239-242. Sims Gould, J., Wiersma, E., Arseneau, L., Kelley, M. L., Kozak, Author Biographies J., Habjan, S., & MacLean, M. (2010). Care provider perspec- Jill Marcella is a registered social worker with a specialization in tives on end-of-life care in long-term care homes: Implications Gerontology and a focus on Palliative Care. She is a research affili- for whole-person and palliative care. Journal of Palliative ate with the Centre for Education and Research on Aging & Health Care, 26(2), 122-129. at Lakehead University. Slatten, L. A., Carson, K. D., & Carson, P. P. (2011). Compassion Mary Lou Kelley, MSW, PhD is a professor of social work at fatigue and burnout: What managers should know. The Health Lakehead University, Thunder Bay Ontario Canada. Her research Care Manager, 30, 325-333. focuses on improving quality of care and quality of life for elderly Statistics Canada. (2011). Residential care facilities, 2009-2010 people with a focus on palliative care. (Catalogue no. 83-237-X). Health Statistics Division, Minister

Journal

SAGE OpenSAGE

Published: Mar 10, 2015

Keywords: long-term care; nurses; personal support workers; grief; workplace wellness

There are no references for this article.