Abstract
Autonomy and selfhood are primary concerns for scholars of long-term care. Previous work has shown how organizational routines threaten client autonomy and disrupt access to the material and symbolic resources that ground the biography of the self. In this article, I examine how a group of African-American older adults within an adult day service center ameliorated these threats through religious expression. In most health care settings, religion is delivered as an individual, clinical resource. At this site, religion and recreation became intertwined such that religion became a participatory resource that affirmed client membership to a community beyond the walls of the organization. However, as an institutionally provided resource, religion was delivered through work routines that constrained which versions of community to which clients could belong. I conclude by considering the implications for the expanding universe of long-term care organizations tasked with the maintenance of the body as well as the continuity of the self.
Introduction
Since the 1970s, the care of older adults has increasingly moved from the private to the institutional setting. As the number and type of institutions has grown, so has the scholarship on the culture of long-term care (Vesperi and Henderson 1995). The most enduring insights from this literature have come from exploring the “biographic disruption” associated with a move toward institutional sites of care. Scholars have described how nursing home placement threatens personal autonomy not only by requiring one leave home but that one abandon the architecture of the self: clothing, jewelry, furniture, friends, and membership in social groups (Gubrium 1975; Paterniti 2000; Wiersma and Dupuis 2010). Barred from accessing their individual collection of social and material resources, residents are reduced to institutionally relevant categories of “bed-and-body work,” (Gubrium 1975; Diamond 1992).
While the nursing home remains a key setting for long-term care, it has been joined by less restrictive organizational forms such as adult day service centers. Adult day centers provide an extensive set of social, supportive, and sometimes medical services on a non-residential basis. Marketed as nursing home alternatives, these programs are charged not only with preventing the spatial disruption of nursing home placement, but with mitigating the social disruption and loss of autonomy associated with institutional care. Yet, these programs face many of the same pressures as the traditional nursing home. Unlike senior centers or community-based activities that target older adults, clients of adult day centers are under the custodial care of the program. Clients may return home at the end of a day, but while in attendance they are the objects of institutional practices shaped by industry regulations, third-party billing regimes, and staff work routines. The physical and cognitive challenges of clients make them reliant on institutional resources for their care. In this article, I am concerned with how clients make use of these resources. Although the organization provides them, clients have some agency in how they use them. How do clients encounter, make sense of, and use organizational resources? How might clients use such resources to preserve autonomy and mitigate the disruptive threat of routinized work?
Specifically, I consider the resources of recreation and religion. While there is variation in the services that adult day centers provide, recreation and religion are both mandated offerings. In long-term care, recreation is more than a way to pass the time; it is a regulated, clinical good. (Buettner 2001; Harper Ice 2002). Credentialed professionals are hired to administer evidence-based activities while the number, frequency, and content of those activities are reviewed for the purposes of accreditation. Similarly, all U.S. health care organizations are required to provide access to religious and spiritual services. Since 1969, the Joint Commission, the non-profit organization whose accreditation standards set the bar for state licensing of health care organizations (Roberts, Coale, and Redman 1987), has included consideration of the religious and spiritual needs of patients in its standards (Cadge 2012). In recent years, that consideration has become institutionalized as a clinical good that requires both active provision and formal documentation (Staten 2003; Cadge 2004; Koenig 2007a; The Joint Commission 2010).
In this article, I explore how clients use institutionally provided religion and recreation to ameliorate the disruption of the self associated with age-related decline and routinized forms of care. I found that while “spiritual counseling” was delivered as a private, clinical good, religious expression most commonly occurred during group recreation. Public and communal forms of religious expression inside the organization became a means through which clients forged a link to a community of believers outside the organization. From the perspective of the organization’s staff, religion-as-recreation was “for the clients.” As a consequence, the timing, character, and content of religious expression became something over which participating clients, rather than credentialed experts, wielded control. However, if, when, and how clients accessed recreational activities was constrained by the needs of caregiving staff to “get the work done,” with work primarily defined as medical and bodily care. Under these constraints, the ability of clients to connect with a community not bounded by religion—or even a religion different than the predominant one—was still shaped by the routinization of bed-and-body work. Through exploring the culture of long-term care in an emerging organizational form, I explore the possibilities and constraints faced by caregiving institutions attempting to preserve their clients’ connections to the world outside their walls.
Background and Significance
Autonomy and Selfhood in Long-term Care
A core concern within the sociology of long-term care are the processes through which the rhythms and meanings of “ordinary society” are replaced by institutional regimes. Because the empirical terrain of this work is centered on the nursing home, most of this scholarship owes an intellectual debt to Goffman’s concept of the total institution (Goffman 1961). Like the asylum from which Goffman theorized, the nursing home is described as a world apart; a place where previous roles, relationships, and routines are erased by the routines concerning the bodily care of residents. In his seminal nursing home ethnography, Gubrium (1975) describes how the routinization of work transformed individuals with distinctive needs, desires, and biographies into commensurable quanta of “bed-and-body work.” Other scholars have elaborated on how the rigidity of work routines, the infantilization of residents, and the prevailing logic of the market, limit the ability of residents to preserve an autonomous self (Diamond 1992; Paterniti 2000; Ryvicker 2009). Collectively, this literature portrays the nursing home as a “people changing institution” (Hasenfeld 1972) where individuals enter as one kind of person and are transformed into different kinds of people—a people stigmatized by dependence and visible only as a function of institutional work.
This totalizing portrait of nursing facilities, however, has always been more ideal type than wholesale reflection of reality (McEwen 1980; Richard 1986). Even within the context of constraint, residents engage in acts of resistance and preservation. Gubrium (1975) observed that residents use their bodies as interactional resources to resist being remade over into bed-and-body work. Others have described the broader range of narrative, material, and interactional resources residents use to preserve a sense of continuity in the face of change (Gubrium 1975; Paterniti 2000; Harnett 2010; Brossard 2016). Although documenting these acts is an important corrective to our understanding of institutional life, this evidence appears largely as a function of individual resources. Residents are described as deploying the “specific capitals” of previous social identities (Brossard 2016), as producing and circulating narratives of a non-institutional self (Paterniti 2000), and as resisting organizational identities with the resources of the body (Gubrium 1975; Diamond 1992; Paterniti 2000). In this rendering of institutional life, the organization’s role is limited to that of adversary.
However, there are reasons to reconsider this limited role for organizations. The critique of the nursing home as a dehumanizing force was not only taken up by scholars, but by a diverse group of advocates, policy makers, and regulators. As a consequence, there have been key changes in the industry. The most fundamental change has been a move away from custodial forms of care altogether. Federal and state payers once offered few alternatives to residential care for those with significant physical and cognitive impairments. However, a combination of pressure from client advocates, the passage of the 1990 American with Disabilities Act, and federal incentives embedded in the Affordable Care Act of 2010, have shifted the economics of long-term care such that states have been incentivized “to rebalance” Medicaid funds from institutional to community-based forms of long-term care (Kaye 2012).
This rebalancing has made it possible for some to receive home-based services. However, it has also legitimated new, community-based forms of institutional care. For clients with high levels of need, a sole reliance on home-based services is too costly a proposition for state and federal payers. As a consequence, there has been a willingness by payers to experiment with the economic efficiencies of “batch care” while still enabling individuals to remain in the community. Adult day centers are one such innovation. These centers support community-dwelling adults by assisting with activities of daily living, therapeutic socialization, and at some sites, nursing and medical services.
An expansion in non-residential forms of group care may create different possibilities for the role of the organization. If the stated missions of these organizations were taken at face value, the institution may be less an adversary than an ally in avoiding the disruption associated with institutional care. At a fundamental level, the intensity of offered services may allow clients to avoid the disruption of leaving their homes for care. At a programmatic level, adult day centers provide structured social activities whose goal is to defend against the social disruption associated with physical and cognitive decline.
This role may be enhanced in adult day centers, but it may not be particular to them. The field-level pressures that created non-residential programs have had an impact on the industry as a whole. Long-term care organizations of all types have been tasked with “bringing the outside in.” When articulating best practices, the nursing home industry increasingly uses phrases like “resident-centered” and “home-like” to describe the kind of care they should provide. This shift is not just reflected in ideals, but in regulation. Long-term care organizations are increasingly held to account for the social well-being of clients. While the form this takes varies by an organization’s scope of service, there are two types of non-bodily forms of care required of all long-term care organizations: recreation and religion.
Recreation and Religion as Organizational Resources in Long-term Care
Social activities have always had a place in long-term care. However, a common sense notion of recreation has largely been replaced with the medicalized concept of therapeutic socialization. Reconfigured as health care, recreation has become a regulated responsibility (United States 1987; Buettner 2001). Activity programs are directed by credentialed experts and notes about activities and their relationship to therapeutic goals are included as part of the medical record (Buettner 2001). For organizations regulated by federal and state authorities, recreation is serious business; both its frequency and content are evaluated as part of accreditation and licensing processes. Through the provision of recreational activities, long-term care organizations may facilitate, rather than hinder, client autonomy and engagement with life outside the organization’s walls (Ryvicker 2009).
A second mandate is access to religion. Long-term care organizations are expected to “accommodate the right to pastoral and other spiritual services,” for clients (The Joint Commission 2009:19). This guideline is purposefully broad. Although it is paired with a specific requirement that admission procedures include a spiritual assessment that is documented in the medical record (Hodge 2006; Koenig 2007a), how organizations go about providing access is largely up to the organization (Cadge 2012). The connection between religion and sick care is certainly not a new phenomenon. There is a long history of faith leaders providing rites and sacraments to religious adherents inside institutions that nursed the ill and dying (Sullivan 2014). However, the contemporary provision of religion in health care differs significantly in character (Sullivan 2014).
Research on the acute-care hospital has shown that hospitals primarily dispense religion like any other hospital service: as a discrete, private intervention delivered by an expert to a patient (Cadge, Calle, and Dillinger 2011; Cadge 2012; Sullivan 2014). Hospitals have largely coalesced around the professional chaplain as their reigning expert (Cadge, Freese, and Christakis 2008). Chaplains, like the organizations that deploy them, are charged with meeting the needs of individuals of all faiths or no faith at all, such that the rites, texts, and symbols of particular religions are replaced by appeals to a universal spirituality (Cadge 2012). Yet, regardless of the form it takes, access to religion appears to be a positive resource for patients facing illness and the end of life (Hummer et al. 1999; McCullough et al. 2000; Lutgendorf et al. 2004; Koenig 2007b, 2015; Bonelli and Koenig 2013; Aldwin et al. 2014).
Recreation and religion are examples of the kinds of programmatic resources through which long-term care organizations are asked to facilitate biographic and social continuity. Contemporary shifts in the expectations and mandates of the long-term care sector suggest that more attention should be paid to the possibility that institutions might ameliorate rather than facilitate the disruption of the self. Through investigating how clients encounter, access, and use these resources, this article contributes to the larger literature on the culture of long-term care in two ways. First, it tries to account for the changed, regulatory environment of long-term care. While previous work has focused on how variation in institutional policies might impact the experience of clients (Ryvicker 2009; Rodriquez 2014), I consider the possibilities for all long-term care facilities through exploring shifts in the broader organizational field regarding the mandate to “bring the outside in.” Second, I consider the way clients specifically take up institutional resources to ameliorate the threat of disruption. We know that clients deploy their own resources—material, interactional, and embodied—to maintain a sense of self. However, I argue that institutions are an overlooked provider of resources in this endeavor. I specifically consider how clients make use of recreation and religion to maintain links with a non-institutional sense of self.
Adult Day Centers as a Medical, Group-level Intervention
In this article, I describe how clients make use of institutional resources within the specific context of an adult day center. There are elements of this context worth considering. The first is that these organizations are health care organizations. While some expressly provide medical care, all operate under the logic of health care. It is through this logic that adult day centers secure payment for recreation and religion. All Medicaid-funded services are legitimated through diagnostic codes, prescribed through a plan of care, and reimbursed as discrete, clinical goods. Medicaid is the primary payor for all long-term care in the US. As a consequence, Medicaid sets the standard for the entire industry.
That adult day centers are health care organizations also underlines that high levels of client dependence are an organizational reality. Although there is variation in the populations adult day centers serve, when state payers conceptualize and fund these programs as nursing home alternatives, many employ eligibility criteria that make their clients similar to nursing home residents in terms of cognitive deficits, physical disability, and medical frailty (Weissert et al. 1989; Gaugler and Zarit 2001; Cohen-Mansfield and Wirtz 2007). Consequently, clients are the site of routinized body work such as toileting, bathing, and assistance with eating. These centers may not be characterized by total segregation from the outside world—a defining feature of total institutions—but high levels of client dependency may be associated with the kind of social segregation that make clients vulnerable to the excesses of workplace routinization. Knowing how these organizations might balance client autonomy and dependency are important matters for our understanding of the culture of long-term care.
The second element is the primacy of group-level interactions. Unlike hospitals, long-term care organizations are not only the site of individual, private interventions, but of communal, public ones. In this context, the incorporation of religion might operate as a group-level intervention as well as an individual one. Moreover, long-term care organizations are the site of enduring rather than episodic interactions. These repeated interactions create a different foundation for the construction of relationships and community.
The importance of the group and the question of community are integral to the larger terrain of long-term care organizations. Although much of the literature emphasizes the “life apart” quality of nursing homes, the long-term care sector as a whole is remarkably similar to the world outside when it comes to major axes of stratification. Long-term care remains one of the most racially segregated sectors in health care due to both a historical legacy of racial discrimination (Institute of Medicine 1981; Smith 1990) as well as present-day acts of racial bias in admission (Falcone and Broyles 1994; Fennell et al. 2012). Additionally, residential segregation by race and socioeconomic status (Massey and Denton 1993; Iceland 2004) continues to shape the homogeneity of clients in long-term care. When family caregivers living in segregated neighborhoods look for facilities and services close to their own homes, their geographically defined choices may produce segregation at the organizational level (Mor et al. 2004; Smith et al. 2007; Fennell et al. 2012).
The relationship between client geographies and those of facilities may not just shape who clients are, but who they become. One study suggests that the social composition of the surrounding area might, at times, remain an ongoing resource in how clients assert an autonomous self. In contexts where institutions are not just located inside but actively situated within particular communities, there are real possibilities for previous social positions and connections to create a bridge of continuity for recipients of institutional care (Brossard 2016). Because long-term care organizations closely reflect society-wide divisions by race/ethnicity and socioeconomic status, we may need to pay attention not only to the ways in which such institutions are set apart, but of the ways in which they are continuous with the pre-existing ties that bind people together.
In this article, I describe how clients in an adult day center made use of institutionally provided recreation and religion to maintain a continuous sense of self. My primary empirical finding was that religion appeared not only through individual encounters with a chaplain, but through communal ones as recreation. When categorized as recreation, religious expression was “for the clients” rather than from the institution, allowing for the kind of religious particularity that the literature suggests is absent from other health care settings. This particularity was used as a resource to affirm membership to a larger community outside the walls of the institution as well as to create an extension of that community within them. However, the routinization of work threatened to enforce a particular vision of community at the expense of individual choice within a dependent population. Religion-as-recreation was delivered through work routines that constrained which version of community to which clients could meaningfully belong while at the center.
As recreation, religion appeared to be something that clients autonomously chose; yet their dependence on organizational assistance raised questions about the ability of clients to opt in or out of group-based religious activities. When religion became recreation, it became an unavoidable aspect of center life by all but the most independent clients. The tension between autonomy and workplace routinization remains a salient matter in long-term care. However, this analysis suggests that resolving this tension may require the organizational acceptance of dependence as much as the promotion of autonomy. I conclude by considering the implications for the expanding universe of long-term care organizations tasked with the maintenance of the body as well as the continuity of the self.
Methods
This analysis draws from 2.5 years of fieldwork at an adult day center I call Ocean View Health Services (a pseudonym). From October 2009 to September 2010, I served as a volunteer within Ocean View’s recreational services department and spent time with staff and clients. In this capacity, I assisted staff in setting up materials for interactive activities, facilitated a weekly poetry group and computer class, moved wheelchair-dependent clients from one location to another, chaperoned clients on the elevator, and sat through recreational activities, both to observe and to help with emergent tasks. From October 2010 to February 2012, I extended these observations to include shadowing Ocean View’s health care providers and attending organizational meetings. In addition to observations, I engaged in formal interviews and informal conversations with administrators, clinicians, support staff, and clients. While the totality of this data informs my analysis, the primary evidence visible in this account comes directly from my observations of and conversations about recreational activities.
The Site
Ocean View is regulated by the Centers for Medicare and Medicaid as a health care organization as well as by its state’s Department of Aging as an adult day center. The intertwining of health care, supervision, and socialization was a core part of the organization’s design. The backbone of its model of service delivery was a centralized, medically supervised adult day center. Its clients spent anywhere from 1 to 5 days a week at the center. The center provided personal care, primary health care services, mental health services, occupational and physical therapy, social work services, supervision for those with cognitive impairments, and socialization through recreational activities. Ocean View was part of a federal demonstration project to evaluate the feasibility of nursing home alternatives for medically frail, older adults. In keeping with the aims of the state, all of Ocean View’s clients were independently certified as eligible for nursing home care due to a combination of medical frailty, cognitive deficits, and physical impairments. Because of a high level of client frailty, medical and nursing care were at the heart of center life.
During the study period, Ocean View maintained a stable census of approximately 400 clients, aged 55 and older. As a group, they were racially, geographically, and economically homogenous. This homogeneity was primarily linked to eligibility criteria. Ocean View drew its clients from a defined catchment area of 12 zip codes. According to the 2010 U.S. Census, 7 of the 13 zip codes had African-American populations of at least 70%. Many of these geographic areas mapped onto neighborhoods that city natives thought of as “black neighborhoods.” As a consequence, 95% of enrollees identified as African-American (see Table 1). Ocean View’s clients were also uniformly low-income. Ocean View was funded through both Medicare and Medicaid. Medicaid eligibility was not a requirement; however, those without Medicaid would have been charged a monthly premium. During the length of my observations, Ocean View failed to attract any such enrollees; therefore, 100% of its clients qualified for Medicaid, an institutional marker of a low-income.
Client Characteristics at Ocean View Health Services, 2009.
Analytic Approach
I employed the ethnographic method of analytic induction, a method where data collection and analysis are performed iteratively rather than sequentially, where analysis seeks variation rather than quantifying trends, and where the goal is a description of a social system that can contain both data and explanation (Emerson, Fretz, and Shaw 1995; DeVault 2008; Katz 2015). Consonant with this approach, religion or spirituality were not my a priori objects of investigation. I did not solicit narratives from clients or staff about religious experiences, nor did I probe for religious understandings of workplace encounters. As a result, this article is neither an interpretative account of religious beliefs nor of the religious or spiritual meaning that individuals may have brought to center interactions. However, very early in my fieldwork, the ubiquitous presence of religious expression at the center made it a phenomenon that had to be accounted for. I accounted for it empirically by noting and paying attention to public moments of religious expression that were recognizable as belonging to formal religious practices such as organizationally defined church services, the singing or performance of religious music, the public application of biblical interpretations to everyday life, and events that contained core aspects of a church service such as preaching or participatory, congregational singing of religious music.
Field notes were recorded through a combination of handwritten notes, typed notes, and audio recordings that were later transcribed. These notes were the foundation for fuller descriptions and reflections written while away from the site (Emerson et al. 1995; Katz 2015). After leaving the field, MAXQDA software was used to replicate and systematize the coding process (VERBI Software 1989). In the text that follows, all statements attributed to individuals were reconstructed from field notes. All names are pseudonyms.
Results
Religion as a Clinical Resource
While long-term care organizations are required to provide access to religious and spiritual services, how they choose to do so is left to each organization (Cadge 2012). While acute-care hospitals have coalesced around the use of professional chaplains, it is unclear if this has become the standard in long-term care. However, Ocean View was traversing a normative path by employing a chaplain as their primary means of attending to the religious and spiritual needs of its clients. Chaplain Kevin Lee identified as a Baptist minister, but he had earned his Master of Divinity at a university-based seminary that describes its pedagogical approach as “interdenominational.” The rise of a professionalized chaplaincy is consonant with the rise of non-denominational credentialing regimes. Chaplain Lee was educated in the theology of his denomination as well as in the ecumenical spirituality necessary for work in secular institutions.
As a chaplain in a secular organization, staff deployed Chaplain Lee to attend to medicalized notions of client problems. Clients struggling with grief, mental illness, loneliness, or family conflict might be referred to one of Ocean View’s mental health therapists. Or they might be referred to the chaplain. Based on my observations of decision-making conversations within the interdisciplinary team, the distinction between these sites of expertise seemed less about the identified problem and more about the known or assumed preference of the client. 1 In addition to staff referrals, individual clients could and did “self-refer” themselves for both episodic and regular counseling sessions with the chaplain. Chaplain Lee was incorporated as part of the interdisciplinary health care team as a therapeutic expert. The chaplain had an acknowledged role in helping to address the problems of clients and in meeting the organization’s responsibility to manage their care.
It was within the context of health care service delivery that the organization’s attention to the religious and spiritual needs of its clients most closely matched published accounts from the hospital. In my observations, the chaplain was Ocean View’s sole embodiment of its commitment to the religious and spiritual needs of clients within the provision of medical care. Outside of referrals to the chaplain, references to religious and spiritual matters were noticeably absent in medical locations. While a client’s religious affiliation was noted during initial enrollment, conversations about beliefs or religious practices were absent from both clinic encounters and organizational meetings about client care. My fieldwork included systematic observations of weekly interdisciplinary team meetings, weekly departmental meetings of primary care providers, twice-weekly assessment committee meetings that determined eligibility and enrollment needs of prospective clients, clinic encounters, and daily organizational meetings. It was clear that religious and spiritual references were not a routine part of organizational conversations among staff. Other scholarship suggests that religious understandings may have lived in private interactions among staff and between patients and staff (Bender 2003; Cadge 2012; Ammerman 2014). However, in encounters that were contextually situated as “clinical” or “professional,” religious talk did not appear. In the provision of medical care, Ocean View accommodated religion in much the same way as hospitals. It deployed a chaplain to deliver an individualized, clinical product that existed seamlessly alongside other medical goods.
Ocean View, however, was more than a site of medical care. It was also a site of recreation. Its recreational activities are similar to what one might find at any older adult-targeted community center. There were organized games of bingo, less organized games of dominoes, musical performances, and a variety of loosely guided arts-and-craft classes. In a medicalized setting, however, recreation was not just “something to do”; it was a clinical intervention. Social isolation is a common experience for older adults, particularly among those with significant physical or cognitive impairments. Recreational activities provide opportunities for socialization as well as physical and cognitive engagement.
The therapeutic role of recreation was institutionalized within the state regulations that governed the organization. “Therapeutic recreation” was listed as part of “the core” set of mandated services alongside nursing and social work. Attention to recreation was further institutionalized through its inclusion as part of a client’s documented and state-audited plan of care. Ocean View’s full-time recreation services director was held responsible for this medical rendering of recreation. She participated in clinical team meetings, provided individual assessments of clients’ level of participation, and made recommendations about client suitability for less-versus-more guided activities. For clinical staff, recreation was an individually tailored, medical intervention. For clients, however, recreation was not experienced as an individual intervention, but a group-level one. It was in the realm of recreation that religion was transformed from an individually experienced, medicalized resource to a publicly expressed, source of community.
Religion as Community Identity
One of my first roles at Ocean View was as a volunteer with the recreational services department. It was from this vantage point that I was initially struck by the footprint of religious programming. Religion seemed to be everywhere. On Wednesday mornings, the chaplain held a bible study. On Monday and Thursday afternoons, there was a full Baptist church service in the first floor dining room. At least twice a week, outside vendors came to perform religious music. On Thursday afternoons, a local church musician led practice for the center’s gospel choir.
I initially found this level of religiosity puzzling. Funded by federal and state monies, Ocean View was a secular organization. Moreover, as I expanded my observations beyond recreation, there was little evidence of staff-initiated religiosity in other parts of the organization. There were even indications that at least some members of administration actively policed the line between secular and religious activity. In December of 2012, the recreation staff had created and displayed a decorative banner over the reception desk by the front door. The making of such a banner was not out of the ordinary; the recreation staff routinely took on the responsibility to make and display decorations every month, usually choosing the theme in accordance with a season or a holiday. This particular December, the banner had a clear holiday theme: an image of white clouds against a blue sky with angels on either side; emblazoned in the middle were the words, “Merry Christmas.”
When I arrived at the center the next day, the banner had been removed. Both the imagery and the “Merry Christmas,” were deemed an inappropriately public display of religion. The recreation staff had been asked by administration to remove it. Yet, in the dining room—just a few steps away from where the offending banner had once been—there were weekly church services. This initially seemed like a contradiction. However, I came to understand that for most of Ocean View’s staff, there was no contradiction. Inside the clinic, religion was legitimated as a medical resource that clients could autonomously choose. Outside the clinic, it was legitimated as a “social prescription” for isolation that clients could also choose.
“The idea is that clients can choose what they want to do, when they want to do it.” This was the description given to me on a formal tour of Ocean View by Katherine, the staff education coordinator. To highlight the diversity of these choices, Katherine pointed my attention to the bulletin board where, as required by state regulation, Ocean View posted a monthly schedule of activities. As we walked through the building, she pointed out the locations where these activities occurred. There was the art room, the sewing room, and the arts and craft room that had an oven for cooking classes. There was also a game room, complete with a pool table. She showed me the large dining rooms on both the first and second floors where clients ate meals, played interactive games, watched musical performances, and participated in seated exercise classes. As Katherine took pains to point out, Ocean View endeavored to provide client choice and foster autonomy.
The activities that clients could choose from were not random; as much as possible, Ocean View tried to provide choices that were meaningful for clients. This mission was carried out, in part, through an expressed desire to be responsive to the particular desires of the community they served. When Ocean View referenced itself as “a community-based organization,” there were implicit and explicit nods to the African-American community broadly conceived as well as to the specific neighborhood communities in which their clients lived. The racial, economic, and neighborhood identities that defined Ocean View’s clients became more than a set of demographic facts; they were important organizational ones.
For many of Ocean View’s clients, religion was an important definer of this community. As I did not inquire about or measure religiosity, I cannot speak to the importance of religious doctrine or beliefs among Ocean View’s clients. But the experience of belonging too and participating in the life of specific church communities was prominent in client conversations and stories. “The church,” Chaplain Lee explained to me, “is very important to our clients.” To make his point, he told me the story of a woman with whom he regularly meets. “One of her goals is to walk again so that she can go back to church.” I did not know the client of whom he spoke, but I had spent enough time with other clients to recognize her experience as a common one. As they aged and became increasingly immobilized by disability and illness, clients often spoke of missing the lives they once had. They spoke of missing the simple pleasure of shopping for their own groceries or of being able to cook “real” meals. They spoke wistfully of having to abandon physically demanding activities like maintaining a vegetable garden or of no longer being able to travel to a nearby city to visit friends. While all of these losses were important, the one that appeared most consistently in both personal and clinical narratives was the loss of church participation.
Many clients struggled to retain ties to their church communities. Although technically community-dwelling, most of Ocean View’s clients were separated from local activities by physical disability. Few still drove and most found getting from place to place challenging. The chaplain expressed the opinion that local churches could have done more to help their older clients get to church. While this critique may have had some merit, my direct support of client activities provided a moderating set of observations. The primary hurdle for clients was not transportation but frailty. Ocean View’s clients needed a skilled set of hands to safely get into and out of cars, a steadying arm walking up and down sidewalks, a persistent push to mobilize manual wheelchairs, and more than a little help getting into and out of bathrooms. Friends, family, and church members who might have been able to provide basic transportation may have found it difficult or unsafe to offer such skilled assistance.
Both the experience of feeling cut-off from church and the hope of going back to church were not unique. The clinical profile of Ocean View’s population, however, made the hope of return an improbable outcome. Ocean View’s services were often instrumental in slowing client decline, but it was rare that they were able to reverse it. Despite the intensity of their services, Ocean View was usually unable to reconnect clients to their previous constellation of activities. However, through recreation, Ocean View was able to build bridges of memory that provided a sense of continuing membership to particular religious communities. Unable to attend their preferred church communities, many clients chose to go to church at Ocean View.
Like the client the chaplain counseled, Ms. Simon’s limited mobility had kept her from attending her home church for several years. She lived alone and rarely left her house except to attend the center and medical appointments. But at Ocean View, she never missed a Thursday afternoon when Freedom Baptist Church came to provide a full “Sunday service.” By contrast, Ms. Aubrey was able to maintain regular church attendance. She lived with her daughter; mother and daughter regularly attended Sunday services together. However, the daughter’s availability did not extend to transporting her mother to weekly choir practices. Ms. Aubrey had given up membership in her church choir. At Ocean View, one of Ms. Aubrey’s most cherished activities became participating in Ocean View’s gospel choir. The choir did not just sing together, they regularly performed at center-wide programs. In joining Ocean View’s choir, Ms. Aubrey was able to not only sing the songs she remembered, but to sing them with and for a larger community.
Women like Ms. Simons and Ms. Aubrey chose to participate in explicitly religious activities. They were joined by others who attended the Monday afternoon church service and those who regularly attended the chaplain’s Wednesday morning bible study. However, the phenomenon of going to church at Ocean View was much more expansive than attending explicitly religious events. Clients had a collective hand in transforming non-religious events into moments of religious expression. There was Ms. Meredith who would unfailingly flag me down to take her to the computer class on Tuesdays. Her commitment to the class did not seem to stem from wanting to learn anything about technology. In all of the hours we spent together, I could only occasionally coax her to touch the mouse or keyboard with her own hands. She preferred to deploy my hands to search for and play online videos of gospel music. Ms. Meredith was no longer able to attend services at the congregation she still called “her church,” even though she had not attended in over two years. Ms. Meredith was wheelchair dependent; her older church building’s lack of a wheelchair ramp made continued attendance impossible. But on Ocean View’s computers, we would play the same songs, over and over again while she annotated each one with memories for me and anyone else who cared to listen. I do not know why she did not attend a different church; but through listening to the music and story-telling in community, it was as if she was still attending the church she remembered.
This turning of non-religious activities into locations of religious practice and performance was not confined to small group activities. One of the most striking examples of such a transformation was through the periodic programs that were crafted for and by Ocean View’s clients. In addition to routine recreational activities, the center hosted seasonal programs. Ocean View held programs to commemorate nationally recognized holidays such as Thanksgiving and Memorial Day as well as occasions like black history month. Despite the diversity of program occasions, the template for these programs was fairly standard. They were structured after the public events most familiar to clients: that of a church service. The program would invariably open with remarks by the chaplain, followed by a reading from the bible, one or two songs from the gospel choir, and end with a speaker, who was usually the chaplain.
The work of staff made such programs possible. But the performative work of clients was essential to turning these programs into religious events. One particular Thanksgiving, the clients planning the program had asked one of Ocean View’s van drivers to speak. He had been recently ordained as a minister in his Christian denomination and they wanted to celebrate his achievement. The driver did not disappoint. He gave a short but exciting speech that was indistinguishable from a church sermon. He ended his remarks with a decidedly non-ecumenical call for his listeners to repent. “If anyone here doesn’t know Jesus,” he offered, “you can come and talk to me afterwards and I will pray with you.” Several clients in the audience expressed their encouragement and agreement with calls of “Amen,” and “Alright.” Clients who attended this and other programs were able to experience more than spiritual support. They were able to affirm their concrete connection with a community of believers outside Ocean View through the songs, rituals, and participatory encounters common to many African-American religious traditions.
There were times and places where Ocean View’s clients became, collectively, a church flock. A flock, however, requires a pastor. Some clients participated in transforming the ecumenical vision of a chaplain into the kind of religious leader they desired. The staff may have called the chaplain “Kevin,” but most of the clients called him “Reverend” or “Pastor Lee.” The chaplain’s mission was to help his flock connect with a part of their lives that was threatened by disability and illness. In addition to visiting the sick and performing the kind of generalized ministry of presence characteristic of chaplains in secular institutions, Chaplain Lee strove to recreate elements that would make Ocean View recognizable to clients as church. In meetings with staff, Chaplain Lee adeptly used the professional language of spirituality and therapeutic support. At gatherings with clients, he used the language, life-ways, and rituals of the Baptist church. I watched Chaplain Lee repeatedly deliver performances marked by the cadence of Baptist sermons at client events. Sometimes these performances were expected, such as at the seasonal programs where the chaplain inhabited the role of pastor by reading and interpreting biblical scriptures and delivering sermons. But at others, they were less routine.
Ocean View held monthly community meetings. These meetings were a time for clients to hear about and discuss things happening in the center. They were usually led by a staff member from the recreational services department. There were times when the chaplain was asked to perform this service, both because the recreation department may have been short staffed and because the clients directly requested more time with the chaplain. On one such morning, I watched Chaplain Lee enter the second floor dining room with his bible in hand. He took the microphone and began to share the death of one of their oldest clients. “Ms. Johnson passed this morning. Peacefully. Isn’t that a blessing? We should give God the praise.” He then began to give a short, 7-minute sermon about the difference between “Fool’s Rules” and “God’s Rules.” “We should,” he said, “think about the example of Ms. Johnson who had followed God’s rules.” His sermon followed the rhythm of call and response, asking “can I get an Amen?” and in turn receiving responses of “Amen.” He ended his sermon by opening his bible to the book of Ecclesiastes, reminding his listeners that the race was not to the swift.
In contrast to published accounts from the acute hospital, most of Ocean View’s religious activities were neither ecumenical nor private. Embedded within recreational activities, they were particular in content and experienced within community. What clients found desirable in these interactions was not therapeutic counseling but material practices. These practices were specific to an African-American style of worship common to Baptist congregations and familiar to a number of African-American religious traditions. More importantly, these were communal experiences, not individual ones. Whether it was a group of five in choir practice or a group of 35 in church services, these activities were experienced in community. Through providing a location for remembered songs, rituals, and activities, these recreational activities created a bridge of experience to what clients found affirming about lost or attenuated connections with their religious communities. Ocean View did more than “provide access to religious and spiritual services”; through recreational activities, Ocean View became church for some clients. This becoming was less a function of staff choices than a coming together of clients’ collective initiation and choosing of church.
When Community Creates Exclusion
Ocean View-as-church was not only a way of reliving past memories, it was also a way of affirming and building a sense of community within the organization. At Ocean View, church became the public language of inclusion within the community. But as a public language, it also created the grounds for exclusion. Although some clients found the idea of Ocean View as a home church comforting, others did not. Some clients expressed their discomfort through non-participation. There were clients like Mr. Mathers who actively avoided most of the large group activities. Able to walk quite nimbly with a cane, Mr. Mathers navigated the center at will. He eschewed most of the group activities at Ocean View through simply walking away from them. He spent most of his time in the center’s game room where clients alternated between self-organized games of dominos and conversation. When I asked him why he declined all of the group activities, he noted that most activities seemed to turn into church. “I don’t have a problem with church,” he noted. “I just don’t necessarily want to go every day.”
Mr. Mathers represented a small but definable group at Ocean View who, even though they answered affirmatively to being Baptist during enrollment, were not particularly religious. This group included clients like Ms. Greer and Ms. Bentley who, when I asked if they wanted to leave the arts and craft room for church services one Thursday, rolled their eyes in unison. These clients were easy to find; they migrated to the spatial margins of Ocean View like the game room or the arts and crafts room; others took up less typical positions in the hallways or even the clinic waiting room.
While some clients excluded themselves from Ocean View’s group activities because of a desire to avoid religion altogether, others excluded themselves because of a desire to avoid this particular form of religion. There were clients like Ms. Grady who, although she professed a deep Christian faith, diplomatically explained why she rarely ventured outside the sewing room. “I’m Catholic. I’m just not used to that way of doing things.” She was joined by Seventh Day Adventists and Jehovah’s Witnesses who did not find Ocean View’s specific form of church recognizable or appealing. Ironically, it was sometimes religiosity itself—the strength of a client’s attachment to their own beliefs—that made some clients feel that Ocean View’s recreational activities were a hostile place. One client had a very strong attachment to her Jehovah’s Witness faith, a Christian denomination characterized, in part, by its requirement that clients actively maintain their doctrinal separation from other Christian groups. She confided that she had begun avoiding Ocean View’s church services after a series of mild but public doctrinal disagreements with the minister who led one of the weekly services.
Although not everyone found the same value in Ocean View’s provision of religious recreational activities, such examples of choosing not to attend religious programming would seem to be in line with Ocean View’s ideal of autonomy. Incorporated into Ocean View’s calendar as recreation, religion could be seen as something clients could choose or not choose. However, the freedom to do so was challenged by the constraints of space, dependence, and community. Figure 1 is a reproduction of a daily schedule of activities. Such a schedule suggests at least three options for clients to choose between, each morning and afternoon. While there was usually one religious choice, there were at least two non-religious choices. Based on a content analysis of three months of programming, only 17.5% of available activities were explicitly religious in character. However, the empirical footprint of religion becomes more visible when one moves from counts to probabilities.
Reproduction of a daily schedule.
Space was the primary constraint on choice. On any given day, approximately 100 clients would occupy the center. Some activities, like discussion groups or bible study, happened in smaller rooms that typically held between 5 and 8 clients. As a practical matter, however, most clients had to be situated in one of the two, large dining rooms, which typically held between 30 and 40 clients. A client who spent an entire day in one of the two dining rooms had between a 29% and 33% chance of sitting through at least one hour of religious programming. In transforming significant portions of Ocean View’s recreation schedule into a substitute for church, clients who wanted to opt out of religious programming not only had to avoid explicitly religious activities like church services, they had to create a center routine that decreased their chances of spending time in the dining rooms. The possibilities of doing so were greater for some clients than others.
Bed-and-body Work in New Terrain
The second limitation on client choice was level of dependency. Although there is little question that adult day centers offer more autonomy than nursing homes, clients were still constrained by the work routines of staff. One Tuesday afternoon, I had just spent the last hour helping serve lunch in the first floor dining room. It was a few minutes before 1 pm when a client caught my eye and waved me over. “I’m new. This is my first week. Can you tell me what’s scheduled this afternoon?” I described the following choices. On the first floor, there would be a service by Freedom Baptist Church. On the second floor, there would be a small group discussion and a movie. She briefly pondered my descriptions and said, “I don’t think I want to stay for church. Can you take me up to the second floor for the discussion?” The client could stand, but she was a fall risk and was required to use a manual wheelchair in the center. But she was too frail to use her upper body to navigate the chair on her own. She needed physical assistance to get from one activity to another. She also needed my help in moving from one floor to another; for safety reasons, clients were not allowed to operate the elevators alone. Without my direct assistance, she would have been completely unable to exercise much choice.
There were other obstacles. We had to navigate a room of intricately positioned wheelchairs, walkers, and difficult-to-move clients in stationary chairs. To extricate my transport from the middle of the room, I had to move and reposition four other clients and their mobility devices. Once this was done, we headed toward the single set of elevators, which promised its own obstacle of waiting. But as I was about to wheel her out of the dining room I heard “Where are you taking Ms. Blaine?” I turned and met the questioning eyes of one of the center’s aides. After I explained our mission, she replied, “I have to toilet Ms. Blaine before you take her anywhere.” I told Ms. Blaine that I would take her upstairs when she got back. While I waited, I was called away by another client request. By the time I had returned, the service was nearing its end and Ms. Blaine had been repositioned in the midst of the activity she had not wanted to attend. In my absence, Ms. Blaine had not found anyone else to take her to the second floor. She would remain in the first floor dining room for the rest of the afternoon—sitting through whatever came next on the schedule.
Ocean View was not just the site of individual preferences but of organizational responsibilities. Clients did not attend the center just to have something to do; they came for medical, personal, and supportive care. Making sure all of these things happened during a client’s day required an orchestrated movement of people and work. The aides were the primary players who made this possible. They transported clients to triage for medication administration; they took clients back and forth to the clinic for medical visits. They also provided personal care such as assistance with showering, eating, and going the bathroom. This work was not organized by personal request but by organizational routine. For example, the aides had lists of clients who, like Ms. Blaine, “had to be toileted” after lunch and before they left the center for the day. Responding to individual requests was difficult when they were managing organizational requests. I often observed a studied “not seeing 2 ” of client’s waving hands by aides trying not to get sidetracked. After watching me run back and forth one morning, one aide remarked, “they’ve got you running” with an unmistakable tone of reproof. While some staff believed the aides to be unwilling as individuals, the larger problem was the kind of work for which the aides were held accountable. A client who left the center without attending their favorite recreational activity might have been disappointed; a client who left without their scheduled shower, their promised lunch, or seeing their health care provider would have been a documented abrogation of a client’s plan of care.
In this context, recreational preferences became secondary to “getting the job done.” Ocean View may not have been a nursing home, but clients were, in some times and some places, remade as bed-and-body work. Dependent on others, many clients accepted the organizational routine as their own. Flagging down assistance, navigating your own and others’ wheelchairs and walkers—it took work to be an individual in an institution. Some of the most dependent clients sat through religious programming for the same reason they sat through other large group programming: it is where they found themselves and it was too much work to leave. It was not happenstance that most of the clients who opted out of religious activities were not only located in the spatial margins of the organization, they were often physically independent enough to transport themselves to those margins. The work of exercising individual preference was work they had the means to accomplish.
Others chose to opt out of the communal aspects of organizational life altogether. Ms. Grady was a case where physical dependence did not keep her from opting out. Wheelchair dependent, she spent her days at the center permanently stationed in the sewing room. However, her dependence kept her immobilized in one room; she could no more easily choose to sporadically opt-into activities as others could choose to opt-out. Moreover, she exercised a rather singular option. It would have been spatially impossible for more than a few clients to choose as she had. Although the sewing room could conceivably fit six people, I never saw more than three clients occupy its walls; it was a tight fit with their attendant wheelchairs, walkers, and dedicated aides.
For some clients, religion-as-recreation was an important way for them to reconnect with a world that existed outside Ocean View. However, for clients whose preferred worlds were not reflected in organizational programming, the ameliorative potential of these resources was less clear. Moreover, this challenge was hidden from view by the organizational realities that produced it. When clients like Ms. Blain “sat through” religious activities, they seemed to be autonomously choosing religion. Statements like “church is important to our clients,” were only partly a reflection of client choice. They were just as likely to be a reflection of Ocean View’s particular notion of community and its unspoken assumptions about what was salient about their clients’ collective biographies.
Conclusion
Similar to the acute-care hospital, Ocean View offered religion as a therapeutic resource through a professional chaplain. However, in an organization charged with enacting a social as well as medical model of care, religion was also experienced within group level encounters that relied on the recognition of particularistic forms of religious expression. One of my primary findings is that in a medical setting with a more expansive mandate, clients as a group had autonomy in shaping the kind of resource they wanted religion to be. When clients collectively made it so, Ocean View became church. Religion and recreation were intertwined in ways that reaffirmed their connection to specific faith traditions and membership within a bounded community. This participatory affirmation was not just a function of the formal religious activities Ocean View supported, but a consequence of client incorporation of religion as recreation. Staff who might have been inclined to more actively police religiosity of the organization could permit religious expression when it was for and by clients.
The specific use of religion to recreate lost connections might have been particular to the community that Ocean View served. However, my findings underscore the more general observation that autonomy is not just a property of individuals, but of groups. At Ocean View, the increased autonomy wielded by the group was not always matched by that of individuals. Despite the celebration of choice, the ability to opt out of religious activities was limited by client dependence. Baptist or not, religious or not, the majority of clients faced the “choiceless choice” of religion-as-recreation. Long-term care organizations seeking to promote autonomy may need to more carefully consider the balance between individual and group autonomy, particularly as they strive to create or preserve community connections. Moreover, my results suggest that achieving this balance may require that caregiving organizations embrace rather than obscure client dependence. The dehumanizing features of the much-maligned nursing home were not necessarily caused by dependence itself, but by the way care was delivered and the stigma associated with being a recipient of care. In order to avoid enforcing institutionally imagined versions of community, long-term care organizations should consider how they might support an ethos of care as well as one of autonomy.
When I began this fieldwork in 2009, Ocean View was not representative of long-term care organizations. Even among adult day centers, Ocean View’s comprehensive set of services made it an exception rather than an industry standard. A decade later, however, both the present and future of long-term care looks more like Ocean View than not. The funding environment has moved even further toward privileging community over institutionalized forms of care, while the regulatory and market pressures to “bring the outside in” have only intensified.
These shifts represent new possibilities for scholars who study the culture of long-term care. Within the nursing home, scholars may need to more deeply consider the ways in which changed institutional practices may foster rather than sever ties to previous identities and social locations (Brossard 2016). Outside the nursing home, scholars should pay greater attention not only to the move toward home-based care, but to the proliferation of organizational forms required to support that care, which include not only adult day centers but also assisted living facilities and supportive retirement communities.
The empirical and conceptual centrality of the total institution may need to make room for new formulations of institutional life in long-term care. While these new formulations may have obvious benefits for clients and payers, they present a challenge for organizations mandated to protect the rights of individuals while providing group level interventions. How organizations carry out a mission to provide individual, clinical services while supporting meaningful, communal experiences may require more than a little soul-searching about the best ways to care for our growing population of older adults.
Footnotes
Acknowledgements
I wish to thank Amy K. Bailey, Emily Marshall, Christine Percheski and Hana Shepherd for feedback. Early versions of this work were presented at the 2017 Association for the Sociology of Religion Annual Meeting and at the 2016 American Public Health Association Annual Meeting where it received the Aging and Public Health Section’s Betty J. Cleckley Minority Issues Research Award.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a National Science Foundation Graduate Research Fellowship.
