“You gotta have your cry”: Administrator and direct care worker experiences of death in assisted living

Abstract

Assisted living (AL) is increasingly a site of end-of-life care and a long-term care location where growing numbers of people are aging in place and dying. Despite these trends, limited research focuses on how death and grief impact the work environment in AL. This grounded theory analysis examined qualitative data collected from 27 administrators and 38 direct care workers (DCWs) in 7 diverse settings. As assisted living administrators and DCWs experienced resident death, they engaged in a dynamic and individualized process of “managing the normalization of death,” which refers to the balance of self-identity and workplace identity. The process of reconciling these opposing contexts in AL involved several individual- and community-level conditions. Administrators and DCWs would benefit from additional resources and training around death. Increasing collaboration with hospice and clarifying policies about death communication would better prepare the workforce to acknowledge the end of life in assisted living.

Introduction

Assisted living (AL) staff, including direct care workers (DCWs) and administrators, routinely experience the death of residents in a setting that is increasingly characterized by aging and dying in place. Research in other long-term care and health sectors, such as nursing homes (Black & Rubinstein, 2005), home care (Boerner et al., 2017), and hospitals (Kessler et al., 2012), suggests that dealing with death in the workplace can lead to grief, burnout, and in some instances, secondary traumatic stress (Samson & Shvartzman, 2018). While less is known about how members of the AL workforce experience the process of resident death in the context of AL, evidence shows that DCWs see death as a normal part of AL and that staff-resident relationships are influential in end-of-life experiences, but lines between formal and informal care can be blurred in this setting (Munn et al., 2008). Munn et al. (2008) also found that DCWs sometimes experienced grief on par with the death of their own family members. A gap remains in understanding the grief and bereavement experiences of, and available resources provided to, AL DCWs and administrators. Addressing this critical knowledge gap is essential to improving the quality of work life among those in the industry, and this research is made even more timely and important because of the ongoing COVID-19 pandemic.

DCWs provide the bulk of hands-on, end-of-life care in long-term care, which is physically and emotionally demanding work (Ball et al., 2010). To supplement end-of-life care, over two-thirds of AL communities nationwide allow residents to enroll in hospice in order to support residents’ aging in place (Harris-Kojetin et al., 2019). In some instances, DCWs interface and coordinate with hospice workers, but in others, hospice workers assume responsibility for resident care (Ball et al., 2014; Kemp et al., 2019; Vandenberg et al., 2018). While DCWs are likely to receive training in necessary care skills (e.g., Cardiopulmonary resuscitation, infection control, pain management) and ethics and confidentiality, few receive training in end-of-life care or their role as a care assistant (Kelly et al., 2020). Furthermore, Kelly et al.’s (2020) analysis of training requirements for DCWs across states finds that none mandate teaching workers about their own “self-care,” which “is particularly troubling” (p. 25) given their role in resident care and the fact that AL workplaces that offer grief counseling are the exception rather than the rule (Kemp et al., 2010).

Less is known about the reasons administrators choose their careers in assisted living and how they experience death compared to direct care workers. A portion of administrators begin their careers as DCWs, but many enter AL as administrators (Ball et al., 2010). Meanwhile, research in this setting shows many DCWs are drawn to AL because they expect to see fewer deaths and a more home-like environment than the nursing home setting (Lepore et al., 2010), which suggests that some may be ill-prepared to manage their emotions when residents die. Most are motivated to work in long-term care for underlying moral reasons, namely the desire to help others (Lepore et al., 2010). Meanwhile, administrators report hiring criteria that include having a “caring spirit” (Ball et al., 2010). Many DCWs employed in the long-term care setting develop close, personal, often “family-like” relationships with residents (Anderson & Gaugler, 2007; Black & Rubinstein, 2005), but some deliberately distance themselves, keeping things “professional” in order to minimize displays of grief (Kemp et al., 2010, p. 160). Engaging in emotional distance and emotional control following death can potentially lead to emotional exhaustion and depersonalization impairing ability to provide good care. These emotional processes may be viewed in terms of “emotion work.” Emotion work, or emotional labor, as defined by Hochschild (1979) is the active process of trying to change emotional responses to fit the social structure. Personal factors of DCWs, as well as organizational characteristics, can also influence the level of comfort expressing feelings of grief in the workplace or to what degree they engage in emotion work (Hochschild, 1979) to mask their grief (Lopez, 2006).

The purpose of this study is to gain an in-depth understanding of how administrators and DCWs experience resident death in the context of assisted living. We present findings from an analysis of AL administrator and DCW attitudes and experiences with death alongside workplace culture and end-of-life policies to understand how they shape individual and collective experiences with resident death.

Methods

Design

This analysis uses data gathered during a 5-year qualitative study designed to address critical knowledge gaps in, and identify best practices for, end-of-life care in AL. The study was conducted in metropolitan Atlanta and involved 7 diverse AL communities. In selecting study communities, we intentionally sampled communities to include the range of settings nationwide (Harris-Kojetin et al., 2019), including variation in community size, ownership, and location (See Table 1).

Table 1.

Community Characteristics

Characteristic	Brookrun	Echelon	Fairhaven	Parkside	Solis	Summit Place	Sunbrite
Ownership	Religious Non-Profit	Non-profit	Family Owned	Corporate	Corporate	Non-profit	Private/Medicaid Waiver
State Licensure Categorya	PCH	ALC	ALC	ALC	ALC	PCH	PCH
Licensed Bedsb	47	25	180	125	90	36	6
# of Resident Deaths (%) over 12 monthsc	10 (35%)	1 (6%)	4 (5%)	39 (36%)	7 (9%)	8 (33%)	0
Location	Urban	Urban	Urban	Suburban	Suburban	Suburban	Suburban
Resident SESd	Upper Income	Upper Income	Moderate Income	Moderate-to-Upper Income	Moderate-to-Upper Income	Moderate-to-Upper Income	Low Income
Racial Mix	Majority White	Majority White	Majority Black	Majority White	Black and White residents	Majority White	Black and White residents
Formal Resources Available for Employees	Occasional Rabbi	Chaplain; Supervisor	Supervisor; Open door policy; attend services	Employee Assistance; Chaplain; attend services	Monthly grief support group	Chaplain; transition support group	None
Resident Memorialization	Photo and candle at entry	Photo at entry	Non-descript sign on resident door	Photo at entry; semi-annual remembrance	Photo and flower at entry; Occasional memorial service	Occasional memorial service	None

^aALC = Assisted Living Community; PCH = Personal Care Home see https://aspe.hhs.gov/sites/default/files/private/pdf/110446/15alcom-GA.pdf for regulatory definitions

^bBased on state records.

^cBased on administrator report of number of deaths in last 12 months and average occupancy for the 12 months prior to data collection

^dSocioeconomic status

The study was guided by a relational model of care based on a grounded theory synthesis of the teams’ multiple AL studies (Perkins et al., 2012). Relational theory prioritizes interrelationships and care relationships and orients us to shared meanings and interconnecting social determinants at multiple social ecological levels that can either hinder or promote persons’ ability to maintain a positive sense of self, which can be particularly vulnerable at the end of life (Perkins, 2014, 2021; Perkins et al., 2012).

Participants

In advance of data collection, the study PI engaged with the executive director in each community to describe the study and goals for participant recruitment and to gain permission to enter the community. The PI or a co-investigator conducted an initial interview with the executive director and was introduced to other administrators who would facilitate study recruitment and communication. Within each community, researchers provided study information to staff and other stakeholders.

Following principles of grounded theory (Corbin & Strauss, 2015), we initially purposively sampled DCWs and administrators, including executive directors, activity directors, resident care directors, a director of operations, a maintenance coordinator, a healthcare compliance officer, and one administrative assistant, to achieve maximum variation in qualification, gender, age, years of experience, and usual shift in proportion to the community size. As data collection continued, we used theoretical sampling to ensure we recruited participants with differing experiences to explore multiple dimensions of end of life in AL. Our sample encompasses a range of participants in terms of age and background. This variation coupled with prolonged time in each community provided richly detailed data about participants’ experience of residents’ death and dying in AL (Corbin & Strauss, 2015). Sample size was determined in proportion to each community and based on theoretical saturation, or when subsequent interviews did not result in new information (Corbin & Strauss, 2015). Across the seven communities, we enrolled 107 residents, 43 informal caregivers, 37 DCWs, 27 administrators, and 23 external care staff. This analysis focuses on the 64 administrators and DCWs. Table 2 provides an overview of characteristics for administrators and DCWs.

Table 2.

Participant Characteristics

	Direct Care Workerd (N=37)	Administratore, f (N=27)
Characteristic	Number (%) or Mean (range)	Number (%) or Mean (range)
Female Gender	32 (86%)	22 (85%)
Black or African American	33 (89%)	17 (63%)
Agea	45 (27 - 90)	42 (20 - 69)
Educationb (Mean)	4 (0-8)	6 (2 - 9)
Specialized Trainingc	31 (84%)	14 (52%)

^aTwo administrators declined to share their age

^bEducation indicates years of formal education, quantified on a 0-9 scale. 0 = less than high school diploma, 1 = GED, 2 = high school diploma (not GED), 3 = post-high school technical training, 4 = some college or 2-year associate degree, 5 = three of more years of college but no bachelor's degree, 6 = bachelor's degree, 7 = one or more years of graduate training but not graduate degree, 8 = master's degree, 9 = degree beyond master's.

^cIncludes but not limited to CNA, LPN, RN, and Medication Certificate

^dWith the exception of the higher percentage of Black or African American DCWs in the study sample, figures reflect national-level characteristics noted by Kelly et al. (2020)

^eIncludes executive director, activity/engagement director, maintenance coordinator, administrative assistant, resident care director, director of operations, healthcare compliance officer, memory care coordinator.

^fThe study sample has a higher proportion of female and Black or African American administrators than found nationwide (see Dys et al., 2020).

Data Collection

An interdisciplinary team of trained student and PhD researchers concurrently collected data in seven communities between 2016 and 2020. The research team spent two years in each community beginning with four communities in 2016 and the additional three in 2018. Over the four years of data collection, our team conducted a total of 1,593 visits totaling 3,617 hours across the seven communities. Data for this analysis included semi-structured interviews with DCWs and administrators and fieldnotes collected during visits in the communities or from recordings following the interviews. DCW interviews had a mean duration of 87 minutes (range 25 - 170); the administrator interview mean was 86 minutes (ranged 30 - 172). Most interviews were conducted during a single visit; however, in order to accommodate shifts and staffing schedules, 11 interviews were conducted over multiple sittings. The interview guide included a basic demographic form and open-ended questions based on literature, input from palliative care providers, and our previous research in assisted living. As data collection progressed, we modified guides to achieve theoretical saturation of themes identified in early interviews. Table 3 shows sample DCW and administrator interview domains and questions. Following each interview or visit to the community, researchers recorded extensive fieldnotes that included methodological and analytical memos (Corbin & Strauss, 2015), which provided important contextual information informing the data analysis.

Table 3.

Sample Direct Care Worker and Administrator Interview Questions

Main Question	Topics for Probes (not exhaustive)
Direct Care Workers
1. How does it make you feel when you know a resident is seriously ill or near the end of life?	Level of emotional distress; impact on work/home life
2. Do you communicate your feelings to others?	Fellow staff; supervisors; resident; family; people outside the community
3. What types of training do you have in end-of-life care?	Topics; usefulness; need for additional training
4. What typically happens immediately after a resident dies in your community?	Who is contacted, when, by whom; how and when is the body removed
5. How is a death usually communicated after a resident passes away?*	To family; staff; other residents
6. If you experience grief, how do you manage your feelings?	Religious and cultural influences; family; peers; supervisors
7. Does the community do anything to help you with grief or bereavement?	Type of support; when, where, how often; ever used; need for support
8. How does the community mark the death of a residents?*	What; how; variation and why?
9. If there is a service for a resident, can and do staff members typically attend?*	Reasons; barriers; facilitators
Administrators
1. To your knowledge, have any of your staff had training in EOL care?	What kind; where received
2. How does having seriously ill resident in your home affect staff members’ job content and workload?	Vary by shift, residents’ family support, presence of sitters, hospice
3. What attitudes do staff generally hold about death and dying among residents?	Variations; religious/cultural factors
4. How do staff typically respond when a resident passes away?	Religious and cultural influences; Grief; Differences among staff
5. How are grief and bereavement for staff managed here?	Services available; training received; time off

^*Asked to both DCWs and Administrators

Ethical Considerations

Emory University’s Institutional Review Board approved the study (#00075456). Representatives of each study community and all interview participants were informed about the benefits and risks of participation and completed written informed consent. All stakeholders were informed about the study through ongoing communication and could decline participation at any time during the study; refusing to participate had no bearing on their AL employment. Researchers made every effort to ensure confidentiality by conducting interviews in private or secluded areas of the community; however, some participants wanted to remain where they could be seen in case a coworker or resident needed them. We use pseudonyms to provide community and participant confidentiality.

Analysis

All interview recordings were transcribed verbatim and imported into NVivo 12 (QSR International), which we used to manage and facilitate qualitative analysis. We analyzed the data using grounded theory methods, where we simultaneously collected, coded, and analyzed the data (Corbin & Strauss, 2015). Our initial codebook was developed using early interviews, fieldnotes, and study aims. The codebook evolved based on subsequent interviews, fieldnotes, memos, and literature. Throughout all stages of this analysis, we used theoretical notes and analytical memos (e.g., diagrams, matrices, and analysis charts) to guide theory development.

Following the grounded theory method (Corbin & Strauss, 2015), we used a three-part coding process. First, the larger research team, including master’s, doctoral, and medical students as well as PhD trained researchers, engaged in initial coding and reviewing of data segments relevant to staff and administrators’ experiences with death and bereavement in the community. Sample initial codes included, “death,” “grief,” “funeral,” “body,” “emotion,” “support,” and “hospice.” Next, we collapsed and expanded codes until distinct conceptual categories emerged in order to derive major categories and subcategories related to attitudes, perceptions, and processes around end of life in AL, and we grouped them according to their properties and dimensions. For example, we found that DCWs’ experiences outside of AL, their personal and professional beliefs, care community resources, and utilization of hospice shaped experiences of resident death in assisted living. Finally, the team further explored these relationships and modified categories based on the data. Once we reached theoretical saturation (i.e., no new concepts were identified and relationships among categories were well-established), the first author integrated our findings across communities and compared them with extant concepts in the literature to further explicate our theoretical scheme (Corbin & Strauss, 2015). We refined and organized our concepts around the core category, “managing the normalization of death in assisted living,” which conceptualizes a process that creates, maintains, or diminishes the public facing environment of AL as a place of healthy and happy living (Baiocchi-Wagner, 2012) through inter and intrapersonal relationships within the situational context of assisted living .

Findings

Of the 107 focal residents enrolled in the study, 26 (24%) died during the study period. A majority died in their Assisted Living community (n = 17). Five died in a hospital, four of these were characterized as sudden and unexpected. Four other residents died in their family home or a hospice setting outside the community. As administrators and direct care worker’s experienced resident death, they engaged in a dynamic and individualized process of balancing their self-identity with workplace-identity, along with training (e.g., human capital) identities and internal resources (e.g., emotional regulation). This dynamic process results in what we refer to as the normalization of death, our core category. Findings show that death and dying in assisted living, although a normal and common occurrence, is at odds with the public face of AL, which is one of care and assistance for the living, not for the dying. The process of reconciling these opposing contexts in assisted living involves several interrelated individual-level and community-level conditions (see Figure 1). We begin by describing our core category and then identify the interacting and overlapping conditions that shape this process.

Figure 1.

Conceptual Model

Managing the Normalization of Death and Dying in Assisted Living

Administrators and direct care workers recognized that AL was a place where many residents die, yet typically did not openly talk about death with one another or with families outside of formal discussions related to advance care planning required by state regulations. However, both used language in their interviews that conveyed a phenomenon we have labeled, “Managing the Normalization of Death and Dying in AL,” and this process varied in relation to conditions shown in Figure 1 and described in detail below.

Administrators described the process of dying in AL as a shared experience that had the potential to cause sadness but was part of the everyday milieu. The male executive director from Parkside said of resident deaths that were expected, “When we know it’s coming and we’ve already started our grieving process… they [the staff] are prepared for it.” From this perspective, the expectation of death involves preparation and anticipatory grief work. He continued, “[Death] is part of the practice. It's not that you become numb to death.”

While many direct care workers echoed sentiments of being prepared for death, their way of describing their feelings about residents’ death did not always align directly with administrators’ perceptions. A female Summit Place Certified Nursing Assistant (CNA) described the callousness she perceived when being told about the death of a resident:

I think [administrators] think it’s normal, but it depends on the closeness with the residents. I can speak for myself. I’ve been close to some of ‘em that has passed on. It really bothered me. I come in, “Oh, So-and-so dead.” “What?” You gotta have your cry. It hurts. It really does.

This excerpt highlights the challenge between the personal emotion that comes with the death of a resident and the professional narrative that it is a “part of life,” which requires one to work to hide those emotions through what Hochschild coined “emotion work."

Administrators and DCWs acknowledged the juxtaposition of AL as a place of living and dying, and their role in these experiences, but did so from different perspectives. A quote from a female activity coordinator at Fairhaven illustrates the experience:

I’ve spent a lotta years workin’ in nursing homes. Now, viewing it in another sense, assisted living is just that. It’s assisted living. We’re assistin’ these people to live. We’re assistin’ these people with their life. Why don’t we assist ‘em with dying?….I have learned over the years to assist these people in any way. I’ve been through the whole gamut of their life and living and dying…Being in assisted living and watching them takin’ their last breath, excuse me for saying, but what a joy in that and seein’ that we have assisted them through their journey. I take pleasure knowin’ that I was a part of it. That’s really somethin’.

As she alludes, other locations of care (e.g., nursing homes) are places where death is not necessarily welcome but is understood. The public facing side of AL as a place to live and engage in activities ignores the very real, and sometimes meaningful, “emotion work” DCWs perform in assisting residents through their death as well. Managing the normalization of death consists of the private backstage work, which can be fulfilling but often largely hidden, while concurrently presenting a forward-facing self to other residents, peers, and families that DCWs are strong, equipped for the job, and there to support residents in living their fullest life.

Administrators also emphasized this importance of living over dying. The executive director from Parkside shared the use of the poem “The Dash” as a training tool to reinforce the importance of living. He said:

‘The Dash’ is the dash between the birthdate and the death date on a tombstone….our job in life is to be that dash….we’re the end of that dash…they’re still living….You’re either alive or you’re dead in my opinion….Because when [residents are] with us, we’re responsible for that dash. Whatever small portion of that dash, we’re responsible for it. So there’s a huge difference between aging and place and dying in place…And that’s what we promote every single day in my community is, what can we do to be that best part of that dash for them because it’s still going on.

Four Overlapping Sets of Factors

In line with the theoretical underpinnings of this study and illustrated in Figure 1, the process of “Managing the Normalization of Death” involved four distinct yet overlapping sets of influential factors: a) human capital (e.g., training about and exposure to end of life); b) personal resources (e.g., emotional regulation, resilience, communication); c) workplace identity and expectations (e.g., roles and expectations); and d) self-identity (e.g., caregiving, religiosity, etc.).

Almost all (n=31 out of 37) of the DCWs we interviewed had worked previously in long-term care, which exposed them to resident deaths in multiple settings, and most experienced the death of a family member or friend. These experiences influenced their understanding of an appropriate reaction to a resident’s death, further silencing staffs’ feelings regarding grief and death in assisted living. As a female CNA at Echelon said: “Just about every person here have experienced death somewhere, somehow within their own family, so we all know how to cope with it.”

When discussing their reactions to resident deaths, many participants, DCWs in particular, spoke about their experiences with death inside and outside of AL as influencing their ability to cope with death and their views on death. For example, a personal care assistant at Fairhaven shared how her feelings shifted over time:

Even though we're losin' them, they're gonna be okay. That part is not as bad for me. I don't think you will ever get used to seein' somebody pass away, but it doesn't hurt as much as it used to when I first started doin' it.

In some cases, DCWs referred to past experiences teaching them that loss was a part of life but also talked about the need to separate from grief to minimize its effect on their psyche. Those who had prior experiences with death and had more personal, internal resources to draw from, such as emotional regulation, could manage their emotions in a way that was protective for themselves and protective of their image as an emotionally strong yet caring DCW. A male CNA at Parkside said:

Yeah, I have to try to leave [work] here because if you don’t leave it here, you’re going to let it affect you, because you’ll see people pass away…From the day my dad passed away, that [death] doesn’t affect me that much anymore….anybody could go… I’m not cold, but you have to learn to leave it…because if you don’t, it will stress you out. If you see a resident go down, it’s gonna bother you, so you have to learn to compartmentalize. That’s it. Okay, this is [a] job.

Administrators had their own workplace and training histories. Just over half (n=14 out of 27) had training in long-term care (compared with 84% of DCWs); however, only two (7%) had a CNA license (compared with 24 (65%) of the DCWs). Their training was more often in the form of nursing home administration, dementia training, or medication certification. This difference in training and roles meant that most administrators in this study lacked direct exposure to the death experience. This more distant relationship informed how administrators constructed their workplace identities and expectations. For example, the executive director at Parkside detailed the differences between the relationships she and the DCWs have with residents’ family members.

We empower all of our [DCWs] to call families to update them….we also empower team members…like if a resident runs out of incontinence products—it’s not me that calls….And then one of the most impactful things we have with our direct care staff and our families is, when we have our change of condition of assessment…we bring our direct care staff in that meeting. Because for me to sit here and say, “I’m charging you an extra six hundred dollars because I said so,” it’s less impactful than a [DCW] that’s sitting in front of the resident’s family and says, “I now have to use this when I’m assisting your mother. She now requires me to do this, where she didn’t two months ago.”

Over half of the DCWs identified as being religious and described how religion guided their experiences and reactions to resident deaths. For some staff and administrators, religion allowed them to “leave it in God’s hands” as the following female CNA from Parkside said:

I don’t see death as a terrible thing…. especially with my religion, I do believe that there’s a heaven and a hell. I mean they lived a good life, they go to heaven. There’s no more suffering, no more pain, none of that. It helps as far as me being able to cope…They’re free.

For others, religion instilled a desire for caring and connection and increased the strain when a resident died. As a female CNA at Summit Place said: “I’m a Baptist. I’m a caring person, concerned about ‘em [Residents]….you get close to ‘em and somethin’ happen. It’s sad to me. It’s just sad.”

Relational Contexts Surrounding Death

Three key relational contexts also shaped the way direct care workers and administrators managed the normalization of death and dying in assisted living. These included: 1) the intimacy of resident-staff relationship; 2) varying levels of family and hospice involvement; and 3) quality of peer support among staff.

Both parties acknowledged that the intimacy of resident-staff relationships was another key context that shaped how the normalization of death and dying was managed. A female resident care director at Parkside said, “The one that works closely with 'em is the one that's mostly affected.” However, because most administrators were not involved in daily hands-on end-of-life care, many lacked the understanding of the impact residents’ deaths had on DCWs. The assistant activity coordinator at Brookrun described the amount of time she takes to recover from a resident death; “I know people die [but], for weeks, I am just hurting because the kind of relationship that you develop with them.” This experience highlights that the level of grief some DCWs experience is not adequately recognized or addressed.

The level of family and hospice involvement at the end of life was another important contextual condition that shaped administrators and DCWs end of life experiences. In communities with more family involvement, DCWs often made efforts to stay “out of the way” during care tasks to allow time for visits. Some DCWs expressed desire for family to be more involved before a resident reached the end of life. Some described feeling “put aside” after caring for a resident when families “showed up” at the end of life, but they also felt they could provide that necessary companionship and support to residents who did not have family or whose families could not be present at the time of death. Administrators and DCWs felt that when residents had someone nearby at the end of life, it helped make for a good death. Communities in this study had varying levels of family support. At Fairhaven, most families worked full-time and had limited time to visit residents compared with Solis, where most family members were retired, and many visited daily. Notably, residents at Sunbrite had little to no family involvement. Hospice was underutilized across our study communities, with only three using hospice care regularly. Yet, most participants had positive perceptions of hospice and appreciated the support, especially around pain management. For example, the manager of personal care at Summit Place said, “hospice is…an organization that help people die gracefully…without a lot of pain, and suffering…We’re not gonna make any decisions until we talk to [hospice]. So it’s usually a good relationship.” Most DCWs valued pain management, which lessened the emotional toll of seeing a resident they care for in pain at the end of life. Some DCWs, however, felt hospice utilization created distance between end-of-life caregiving and the grieving process, and a few DCWs in three communities expressed concerns about the use of morphine to “speed up death.”

Staff relationships also influenced how DCWs experienced end of life. An Echelon CNA noted, relying on peers in the workplace who also shared her religious beliefs was an informal resource. She said, “Most of us here…We believe in God, so we always just pray, or we get together and pray. We always talk about the good times, not the bad times.” However, peer support was limited in communities with high rates of employee turnover, where co-workers have weaker bonds. For example, 72 percent of the staff left Fairhaven during our study.

Pace and Pattern of Death

A central context that influenced how staff and administrators were able to maintain normalcy and limit emotional responses was the pace (i.e., the frequency of death) and pattern (i.e., dying trajectory) of resident deaths in the community. The pace of deaths influenced the preparation for death and the ability to manage the emotions associated with resident death. Across our study communities, administrators reported that approximately 20 percent (n=69) of the residents in study communities died in the 12 months immediately prior to data collection. There was wide variation across study communities over the course of the study (Table 1), as well as within individual communities. For example, Sunbrite, which had five residents and had not experienced a single death in the 12 months before we collected data, had three residents die during our two years there: one in year one and two in quick succession in year two. Other communities experienced periods with deaths “back-to-back” with a personal care assistant at Fairhaven sharing that she told her managers, "It's okay to give [her] a resident that's not [laughter] dying" because she had worked with “so many” residents that died close together.

DCWs and administrators also discussed how the pattern of death impacted them. Both parties felt that residents with a long death trajectory, who often had the support of hospice and their families, allowed everyone to “prepare for it.” Long, slow death trajectories occasionally caused emotional pain for DCWs, and that pain was often lessened when the family or community used hospice support but were difficult to witness when pain was not managed. For example, a female CNA at Brookrun shared:

Most of the time…when you’ve been with them for so long and you see how some of them are really in pain. They’re really suffering…It’s nothing you can do to make them comfortable with that transition. You go through a little despair…It affects me in a way like I just want that pain that they’re [feeling] to go away….I’m more emotional when they’re still trying to hold on because they don’t wanna go. That’s where the emotional part of it is. But once they do finally relax and, you know, and they go, I might sound crazy, but I feel a peace. You know, they’re at peace now. They don’t have to struggle anymore…They're not in pain anymore.

Administrators and direct care workers also mentioned that dying in assisted living can help people have a good death because they are not “dying alone.” All communities reported that expected deaths were more common than sudden deaths, and many DCWs and administrators related expected death to a good death as the following female Solis CNA stated:

A good death to me, just somebody slips away. No pain, no nothing, you just slip away. Let me put [it] like that. A bad death is just something happens that you didn’t expect to happen, it just suddenly happens. That’s more painful than expectin’ it to happen.

Additionally, sudden death eliminated time to “prepare for it.” The Parkside executive director highlights this comparison:

We haven’t processed as a community what just happened [an unexpected death]…same thing for families—those that are on hospice and have gone through that process, they know it’s coming. Which is why it’s so hard to grieve when there’s a sudden death like that. And it’s a lot harder…we sometimes bring in a hospice chaplain after an unexpected death, even if they weren’t on hospice.

Sudden death also can result in an emotional response that was not only at odds with workplace expectations and DCWs’ professional identities, (e.g., crying in front of residents) but also “traumatizing” to them, as DCWs at Brookrun and Parkside noted.

Processes at end of life (EOL)

Policies and Practices at the Time of Death

Administrators and DCWs described clear and consistent policies and practices about who to contact, how to prepare the body, and pathways for transporting deceased residents when a resident died or was found dead, which helped staff understand the process. Across all communities, except the smallest one with limited staff members, DCWs were to communicate resident deaths to a supervisor who would contact the family. If funeral home information was on file, as it often was at Parkside, then the funeral home would be contacted at the same time. The process was “easier” and clearer if the resident was on hospice at the time of death. As a male reminiscences director at Parkside shared:

If a resident is on hospice, it’s easier….We call hospice, then call the family….Then hospice really takes over from that point….If they’re on hospice, it’s really a clean sweep…If they’re not on hospice, we call our nurse, and then we call the family. Then…the nurse would really facilitate that if the family didn’t already have arrangements made.

DCWs rarely engaged with family members or funeral home representatives during the notification process; none expressed desire to do so. Yet, they described their role in caring for and preparing the deceased resident’s body for the family and funeral home to arrive and took pride in this and all parts of care. For example, a female CNA at Brookrun shared the intimacy of care that occurs when a resident dies. She said:

[I] go let the nurse know…In the meantime, I'm gonna wash this person up, have them looking presentable for when family members comes in or come view them, whatever the case may be. I have bathed them when they just passed. I'm bathing and talking and singing, praying at the same time. Talking to 'em, what they feel, 'cause they're hearing this last thing, though. When [their] heart stopped, [hearing] still function somehow, I don't know. It’s the works of the Lord.

In general, the practice of body removal was also clear and understood, even if guidelines were not written. We are not aware of any written guidelines in these study communities. In some communities, deceased bodies were removed away from the residents, through a back door, a service elevator, the kitchen’s service entrance, or a small hallway, further accentuating the hidden aspects of death. At Parkside, there were differing accounts. The resident care director said, “they enter through the front door, so you use the front door,” yet a female CNA reported that residents were taken out through the kitchen’s service entrance. Change in administrators and policy also impacted how death was handled. For example, midway through our study Summit Place made an official change resulting in an open display of the deceased resident, while common in hospice, was uncommon across these communities. As the resident care manager stated:

They used to take the bodies out the back door where the trash is…We’ve actually purchased a beautiful…Summit Place blanket…They go out the front door. There’s a moment of silence. We honor them as a resident, not as just a dead body.

Communication about the death of a resident to staff and other residents was not always clear; direct communication was frequently avoided by DCWs and administrators. DCWs and administrators reported the process of communicating about resident deaths in a variety of ways, including through staff meetings, morning huddles, other residents, word of mouth, and mass emails.

There was less clarity surrounding staff communication with residents about resident deaths. Residents knew when someone was missing from the dining room and inquired about absences, but most DCWs were hesitant to communicate reasons for these absences, especially death. DCWs voiced concerns about violating resident privacy or causing residents’ distress if they share about a fellow resident’s death. Although DCWs were reluctant to communicate about resident death, communities and administrators took different approaches to resident memorialization, usually in a passive manner (See Table 1). Administrators, in general, were not as involved in daily resident care, which allowed for some professional distance or the ability to share information about the death of a resident without showing emotion.

Staff Support

There were differences in perceptions about what DCWs needed to deal with grief and the types of support available to them. Although death is normalized in AL, some administrators recognized that DCWs could burn out and that some staff were more affected than others based on contextual conditions including level of care, closeness to the resident, and the length of the dying process (i.e., sudden v. slow). As the Summit Place resident care manager said:

[Death] definitely takes an emotional toll. It’s [a] constant communication about how we’re doing, our feelings, and whatnot….[Some? DCWs] tend to do more. They go beyond the scope sometimes just to make sure someone’s taken care of, I have to…make sure they’re not wearin’ themselves out. Takes a toll on them emotionally, physically, but, also, it feeds their heart because they know they’re providing amazing care and love for this person who—it’s a gift to them. They’re honored.

Administrators acknowledged the toll that death might take on DCWs, but based on our interviews and observations, direct conversations about grief between DCWs and administrators were rare. Grief affected them in many ways, and the availability of support and resources for dealing with grief differed within and across communities (See Table 1).

Most administrators acknowledged the importance of attending resident memorial services for some staff but stated they had not given it much thought and would allow if asked. Staff at most communities did attend services, but DCWs often understood that they were expected to be the one to initiate a request for support. Administrators at Parkside and Summit Place were the most encouraging of staff attendance at services. Although DCWs expressed a desire to attend certain services, in many but not all cases, they felt that they were unable to go because they needed the hours or did not have time off.

Resources and Training

The financial and human resources available to staff also contributed to how DCWs and administrators managed end of life in assisted living. Well-resourced communities, especially those that were corporately owned, offered DCWs a wider range of grief and bereavement support than under-resourced communities. For example, Parkside had a robust employee assistance program, and most DCWs felt they could access support if they needed it.

Even with available informal and formal resources, administrators and DCWs expressed desire for additional training or information about end-of-life care. Rather than training on body work and bodily function at the end of life, they wanted education on talking about death with residents, being sensitive around families, and greater understanding of how to manage emotions around death. The Brookrun executive director highlighted this need:

Sometimes, I think that's important for [staff] to understand what is taking place [at the time of death]. “Being sensitive and empathetic to the families…I think education always should be continuous about that process…I know my limits. It's very hard. I get very emotional…This is the only piece I don't like….Then when that time does happen, [DCWs] they have a huge role. They have to go in there and get a person ready. I think mentally, you have to be prepared to do that.

For the Fairhaven activity coordinator, the need extended to how to approach the administrator:

[We need] a good in-service and not just one in-service but a follow up. An open-door policy to your administrator if you wanna talk about it….You spent eight hours of your day, every day, taking care of this person, and now, the person is gone. It takes a big chunk out of you. You need to be sensitive about it, and you need to be compassionate but learn how to let go. It’s not [an] easy thing to do.

Administrators also requested additional training on how to have difficult conversations about advance care planning, and both groups asked for assistance with negotiating and better understanding HIPAA regulations regarding sharing information following a resident death.

Discussion

The goal of this study was to gain a greater understanding of how administrators and DCWs experience resident death in the context of assisted living. Here, we present findings that fill a gap in knowledge about the end of life in assisted living, suggest implications for policy and practice, and raise new questions for further research. Our core category, managing the normalization of death, and conceptual model developed through our analysis and informed by the team’s previous research in AL highlight the individual- and community-level conditions and contexts associated with this process (see Figure 1).

An important dimension of managing the normalcy of death is the level of emotion work involved. Emotion work, or emotional labor, according to Hochschild (1983:7), requires an individual to show or hide emotion to maintain the impression that they think others expect to see. Hochschild’s concept of emotion work builds on Goffman’s (1959) theories of dramaturgical emotion and impression management, which also enters into managing the normalization of death and dying. Within assisted living, DCWs often engage in impression management and control their emotions to align with workplace norms and professional expectations on the part of peers, residents, administrators, and families.

Hochschild posited two primary forms of emotion work: “surface” and “deep” acting. The concept of surface acting refers to the attempt to openly modify public displays in emotionally challenging situations, such as an unexpected death (e.g., concealing tears), whereas deep acting involves modifying one’s feelings to display appropriate emotions (e.g., convey empathy for loved ones). These efforts may be managed within the context of what is and is not considered appropriate under certain workplace conditions (Hochschild, 1983). In assisted living, emotion work is often focused on hiding “inappropriate” emotions (e.g. visible grief), while continuing to express “appropriate” emotions (e.g. compassion and caring) at work (Glomb & Tews, 2004). Staff also expressed uncertainty about how to communicate about resident deaths to other residents. As in previous studies, DCWs in this study were uncertain about the Health Insurance Portability and Accountability Act (HIPAA) (Roth & Eckert, 2011), feared making residents sad, or wanted to leave it up to someone better equipped to handle the response (e.g., a chaplain or administrator) (Cooke et al., 2021).

Emotion work is a multi-dimensional construct and some concepts, such as surface acting, have been found to relate to negative job satisfaction (Wharton, 2009). Surface acting, we posit, often occurs in the face of unexpected death and could hide a need some staff have for grief resources, especially in facilities where resources are sparse. We found that access to these resources in assisted living is variable and ranges from peer support to formal employee assistance programs. In communities without formal resources, reliance on peer support can be hampered by high levels of turnover as observed in the larger study (Bender et al., 2019).

There is mixed evidence about the impacts of deep acting on job satisfaction. Some studies indicate it does not relate to satisfaction (Johnson & Spector, 2007), while others find it to be associated with a sense of personal accomplishment (Brotheridge & Grandey, 2002). The latter finding mirrors how DCWs and administrators in this study described the expected end-of-life care. Deep acting may occur more often when deaths are gradual, potentially supported by hospice and family. These deaths are often characterized by residents’ slow withdrawal from public spaces and greater reliance on family and staff for emotional support and physical care (Vandenberg et al., 2018).

Many DCWs and some administrators talked about the “calling” they felt to provide care and spoke about the joy it brought to their lives. Previous research shows that the low pay, long hours, and difficult physical and emotional labor associated with direct care work often requires a level of passion not associated with other occupations (Ball et al., 2010; Lepore et al., 2010). We found that this passion shaped how many DCWs viewed their role at the end of a resident’s life while also motivating them to minimize their need for support. The marketing and philosophy of assisted living does not include a focus on end-of-life care (Baiocchi-Wagner, 2012), although residents, administrators, and staff acknowledge, often silently, the role AL communities and workers routinely play in providing this care. Death is a normal part of care in long-term care, and the administrators and DCWs in this study echoed findings from previous research that, although death is expected in long-term care, it can create unexpected or undesired emotions for some staff (Anderson & Gaugler, 2007; Ball et al., 2014). Evidence from nursing and medical fields shows that, although death is normalized in some settings, unresolved grief and constant exposure to the emotional labor, especially “surface acting,” associated with death can result in staff burnout, increased turnover, and poor mental health outcomes for some (Boerner et al., 2017). Given that some of our study communities experienced 70% DCW turnover during the two years of study, and national data shows that nearly 50% of administrators leave within five years (Dys et al., 2020), understanding and preventing burnout should be of utmost importance.

The process of managing the normalization of death was also influenced by differences in the pattern and pace of death. Based on panel data, Lunney et al. (2003) identify four dying trajectories that differ in slope of decline and physical function prior to death: 1) sudden death; 2) terminal illness; 3) organ failure; and 4) frailty. The terminal trajectory (e.g., metastatic cancer) is the most predictable and more clearly aligns with societal expectations around death and dying and hospice eligibility requirements. Consistent with Lunney et al. (2003), our current and previous research (Ball et al., 2014) shows that frailty associated with advanced age and chronic illness, such as dementia, is the most common end-of-life trajectory in assisted living. Our findings show that lack of training and uncertainty associated with this trajectory (Dobbs et al., 2018; Hanson et al., 2008) often contributes to stakeholders’ lack of preparation for death, including inadequate advance care planning and a lack of provision of needed palliative care (Arneson et al., 2019). Hospice use varies greatly by state (Thomas et al., 2020) and is underutilized in assisted living, especially at 30 days before death. In this study, only 10 percent of residents were on hospice at baseline (Arneson et al., 2019; Ball et al., 2014). Family members may be unaware about end-of-life needs, either because of their own lack of involvement in resident care, perceptions about care received, or because residents do not want to burden families (Perkins et al., 2013; Williams et al., 2008). Sudden death is less common than all three other end-of-life trajectories, but participants in this study noted it was particularly difficult for staff (and families) to prepare for emotionally. Lastly, participants in this study noted the care they provide to residents at end of life helped ensure a “good death” because residents would not die alone (Thompson et al., 2019).

Despite important strengths, we acknowledge some study limitations. Despite a sizeable sample for qualitative research, inclusion of communities reflecting the characteristics of assisted living nationally, and reaching theoretical saturation, these findings are limited to one state in one region of the US. Additionally, since assisted living is state regulated, the requirements for training and licensure vary by state. Furthermore, this study was based on the DCW and administrator perspectives. Subsequent analysis of observational data and interviews with other stakeholders (e.g., residents, families, and hospice providers) will provide additional insights and a more comprehensive picture of death in assisted living, including a better understanding of perceptions of good and bad death.

Recommendations

This research provides valuable lessons. First, assisted living should be recognized as a place where many residents spend the last days of their life and receive end-of-life care. DCWs have routine and intimate interactions with residents as they are dying. Recognizing DCWs emotions, including any need to grieve, is essential. Most DCWs in our study had long-term care experience, but studies show that newer staff might need additional support when dealing with sensitive situations (Burgess et al., 2018).

Second, assisted living communities should offer meaningful and accessible resources for grief and bereavement. Resources should be communicated by administrators and managers; the burden of access should not be on DCWs. Implementing direct and clear policy and communication about time off for grief or memorial attendance would alleviate some DCW burden. Research on staff grieving in other settings indicates the importance of colleague support in coping with grief. Providing an opportunity for debriefing, memorializing, or collective sharing about deaths, for example, facilitated coping within acute care (Meller et al., 2019; Spencer, 1994) and hospice (Ghesquiere & Bagaajav, 2020; Lehto et al., 2020). Access to bereavement resources, including peer and social support, can decrease burnout and reduce turnover (Chang, 2018; Hildebrandt, 2012). In addition, guidance on self-care can be beneficial (Houck, 2014; Strom-Gottfried & Mowbray, 2006). Third, assisted living communities should consider creating and engaging in consistent practices that encourage employee self-care, including guidelines about attending services and paid time off for counseling or bereavement. Finally, additional ongoing training about communication about death and dying is essential. There is a clear need for training and strategies to have difficult end-of-life conversations with residents, families, and staff members.

Findings have implications for policy and practices pertaining to training, resources, and supports for DCWs. As assisted living is state regulated, state policies, for example, could require training on end-of-life care as well as DCW self-care both as a condition of initial employment and continuing education. Currently, no states require any training on two competency-based requirements, DCW self-care and the role of the personal care aide, put forth by the Health Services Resources and Services Administration for the personal and home care aide workforce (Bureau of Health Workforce, 2010; Kelly et al., 2020; National Center for Assisted Living, 2019). Most assisted living communities in the US are for profit, with almost 60% being chain affiliated (Harris-Kojetin et al., 2019). Corporately owned communities could create policies and practices aimed at further educating and supporting staff around end-of-life issues. Regardless of ownership and material resources, care communities could partner with local hospice providers or other relevant organizations to further educate and be a resource for workers. The pandemic and the accompanying increase in resident deaths further exacerbates the need to support workers dealing with end-of-life experiences as part of their daily work lives. National organizations, such as the Center for Excellence in Assisted Living and LeadingAge, might consider taking on this issue.

Providing better support and improving job satisfaction for staff will also ultimately improve the quality of end-of life care for residents and will help to enhance their quality of life – and deaths – as well as family members’ experiences. Recognizing that experiences of death and dying are relational in nature and being attuned to the interpersonal and intersubjective aspects of them are important to improving end-of-life care in assisted living for all stakeholders, including residents, family members and AL staff, and is aligned with guidelines for quality palliative care (Ferrell et al., 2018; Perkins, 2021)

This study contributes to our understanding of death in assisted living, which has been far more pressing and publicly visible during the COVID-19 era. The process of managing the normalcy of death and dying in assisted living relies on the maintenance of a community built to support the living. The impact of COVID-19 has highlighted the vulnerability of this setting, has increased the pace and changed the pattern of death in assisted living, and has placed additional strain on assisted living residents, staff, administrators, and families alike (c.f. Kemp, 2021; Kyler-Yano et al., 2021; Resnick et al., 2021). The longer-term impact on the assisted living workforce and residents has yet to be seen, but our findings provide potential avenues for reducing some of the iatrogenic and modifiable impacts of the inevitable deaths in assisted living settings.

Highlights.

• Assisted living is increasingly a site of end-of-life care, but it is not often openly discussed

• Direct care workers provide important hands-on care at end of life.

• Administrators and direct care workers regularly experience resident death in assisted living and engaged in a dynamic process to balance individual and workplace needs.

• Administrators and direct care workers express desire for additional resources and training around death and grief in the assisted living context.