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BOOK REVIEW |
Professor and Chair Department of Political Science Lehigh University Bethlehem, PA 18015
Gray Areas: Ethnographic Encounters with Nursing Home Culture, edited by Philip B. Stafford. School of American Research Press, Santa Fe, NM, 2003, 317 pp., $60.00 (cloth), $24.95 (paper).
Nobody's Home: Candid Reflections of a Nursing Home Aide, by Thomas Edward Gass. Cornell University Press, Ithaca, NY, 2004, 189 pp., $21.95 (cloth).
The United States does not have a coherent approach to long-term care despite the growing number of frail elderly persons, especially those aged 85 years or older, in need of assistance with their activities of daily living (ADLs). The vast majority of older people with cognitive and/or physical disabilities reside at home, typically cared for by their spouse and/or adult children, mostly wives and daughters. Older people and their families tend to dread nursing homes and only enter them when there is no other viable choice. Placement in a nursing home generally occurs when the primary caregiver is no longer available (she has died or is too sick and worn-out to continue) or the chronically ill elderly adult has impoverished herself, usually exhausting her assets on home care services. Currently, there are about 16,000 nursing homes, most of them for-profit institutions, serving 1.4 million people. The average annual private-pay cost per person is about $60,000.
Though viewed only as a last resort by elderly persons and their families, nursing homes become "home" to a significant percentage of vulnerable older people. Studies show that more than 50% of women and nearly one third of men aged 65 years or older will reside in a nursing home at some time during their life span; about 10%—primarily females—will stay for 5 years or more. Since the introduction of Diagnostically Related Groups (DRGs) in the 1980s, elderly persons have been forced out of hospitals "quicker and sicker," thus generating more intense medical care needs at old-age facilities. At the same time, virtually all nursing home residents require assistance with their daily personal care; about half suffer from some form of dementia.
Certainly, our public policies promote institutionalization. Despite the expansion of home and community services under Medicaid, the federal government and states continue to fund nursing facilities at ever-increasing costs. Ostensibly a private sector industry, nursing homes draw on billions from the public coffers annually. Medicaid currently is paying for nearly 50% of the more than $100 billion total nursing home bill, with Medicare subsidizing another 6%. States are struggling with escalating Medicaid expenses, much of it financing long-term care. The program is now the second most costly item—and in a few places the highest—in state budgets.
Since the early 1970s, countless government investigations, newspaper exposés, and scholarly reports have documented unremitting profiteering by nursing home owners, usually at the expense of residents. Poor quality care, including serious neglect and abuse, is rampant. For the most part, elderly persons are denied their privacy, dignity, and basic humanity. The vast majority of nursing homes, in their relentless pursuit of high profits, skimp on vital patient needs while relying on certified nursing aides (CNAs) for virtually all of the hands-on care. Indeed, such jobs are one of the fastest growing in the nation. They also are one of the lowest paying, offering limited, if any, health care and retirement benefits or opportunities for advancement. These front line employees—mostly females and increasingly immigrants—confront a physically and emotionally exhausting workplace, inadequate training, and severe understaffing. At the bottom of a strict hierarchical structure, they tend to have little or no power over their working environment (Olson, 2003).
A View From the Front Line
Over the years, there has been a growing literature describing the problems of nursing homes but very few have been from the vantage point of the worker. Nobody's Home: Candid Reflections of a Nursing Home Aide, by Thomas Edward Gass, is a particularly unique contribution because it is written by an aide who actually intended to become an elder care worker and not just study the job as a participant–observer social scientist or journalist. He also has an added advantage in that he was not limited to the "better" places that allow researchers to conduct studies, nor was he beholden to any administrator or owner for permission.
Gass, who is employed in a private, for-profit facility in the Midwest, describes the harsh realities of nursing home life with insight, skill, and wit. He persuasively shows us that substandard conditions are inevitable where the primary institutional goals are controlling costs and maximizing profits (the owner of his facility grosses $3 million annually for the 130-bed facility) rather than concern for patients and their caregivers. He explains that many of his home's policies aim at maximizing revenues, exploiting Medicaid money, and maintaining a good public image.
One of the principal issues is the paucity of time, given that Gass has twenty-six, mostly incontinent, dependent, and cognitively-impaired residents for whom he and another aide are responsible every day. According to his calculations, this amounts to 17.3 minutes daily for each of his charges. The CNAs are always short of time. They must labor at a frenetic pace just to get their assigned tasks completed, mostly "bed and body work." It is a strenuous and demanding job. By and large, the CNAs spend their days bathing, grooming, feeding, lifting, turning, and pottying patients, getting their vitals (pulse, blood pressure), and cleaning up feces and urine.
Gass delineates how his charges scratch, pinch, bite, kick, spit, and verbally abuse him. Many of them scream profanities, make never-ending demands, are querulous, and find constant fault with their care. They hack and drool, pilfer small items, and harass one another. Daily, he confronts the co-mingled smells of disinfectant, urine, and feces. The author reports that the scenes are often surreal, like living inside a Fellini film.
Despite their grueling and hectic situation, many of the aides do manage to bond emotionally with a few residents and provide at least some care with compassion, tenderness, and warmth. Occasionally, aides buy the residents extras, such as special lotions or ornaments for their hair. Overall, Gass sees his fellow workers as decent, very caring, dedicated people. And, there are touching moments—when residents give him a grateful hug, peck on the cheek, or pat on the shoulder; relate an intimate story from their past; share a deep secret; or tease him playfully. Gass tells us that he tries to give each resident at least a few seconds of personal recognition, and that there are even flashes of mutual friendship with one or two. He regrets that such connections must be so brief, always circumscribed by time.
He also manages to show us the human face of the residents along with the demeaning experiences they must endure. As he deftly portrays their lives, predilections, fears, and pain (both physically and emotionally), the author reminds us that "... there is an interesting person on the other side of all the problems and misery" (p. 154). His charges include a teacher, truck driver, high school coach, waitress, businesswoman, accountant, antique furniture dealer, factory worker, government official, electrical engineer, and an upper-level administrator. The nursing home produces a leveling, a loss of dignity that cuts across class lines. Alike, the residents are forced to eat and sleep at given times, bathe at the convenience of the institution, live with difficult roommates, and risk the few precious items they still own.
The Cultural Perspective
Gray Areas: Ethnographic Encounters with Nursing Home Culture, edited by Philip B. Stafford, presents a less scathing, almost apologetic account of everyday nursing home life. In Stafford's book you are much less likely to encounter stressed out, poorly paid CNAs hurriedly administering basic bed and body work to dependent, sometimes pleading elderly persons who are forced to surrender all pride and privacy. Though offering thought-provoking and noteworthy observations, the volume tends to ignore the underlying social, political, and economic conditions that foster such dismal conditions. Instead, the editor warns us that "... it is unfair to stereotype nursing homes as uniformly oppressive of the residents and workers" (p. 14). Undoubtedly that is the case. A few residents do indeed, as he informs us, adapt and even find new relationships, hobbies, and roles. Some family members, freed from exhausting hands-on care, can now interact on a more emotional and personal level with their frail loved ones. But do many residents eventually find their nursing home stay meaningful, as Stafford implies? Are grateful spouses or daughters, relieved of their burdens, now comfortable with the quality of care their kin is receiving?
The authors writing in Gray Areas view institutional care as a contested cultural domain—a place where residents, aides, families, volunteers, and even researchers attempt to make meaning and build relationships. They assert that one of the most central issues is the tensions, conflicts, and ambiguities intrinsic to a setting in which residents view the place as home, including domestic ideals of family and social interactions, while administrators and staff focus primarily on medical and clinical concerns. For these researchers, then, the main dilemma is that the nursing home is caught between the divergent dictates of the medical and social models of care.
A growing number of social gerontologists stress the inadvisability of using a biomedical model of care for frail elderly persons in nursing homes (Estes & Binney, 1991; Lyman, 1989). By focusing entirely on body parts and medical problems, such an approach, as Gass and others suggest, leaves the actual person off the charts. Aides are judged based on physical and medical tasks and how efficiently they are performed. Affective care, often invisible and difficult to code, is mostly unrecognized, devalued, and unrewarded. Consequently, residents' social and emotional needs tend to be unmet. As Gass puts it: "We have a schedule to maintain—prescribed routines to follow and tasks to perform and record. All the attention, all the consoling, all the filling of emotional holes and the tidying up of frayed feelings are invisible to the owners, to the administration, and to the official state regulators who monitor us so closely" (p.114).
Ironically, despite the fact that the medical model of care dominates, and nursing homes are increasingly responsible for people with acute and subacute conditions requiring complex equipment and procedures, residents tend to experience sorely inadequate health services. In Gray Areas: Ethnographic Encounters with Nursing Home Culture, Jeanie Kaysar-Jones—who spent eighteen months carrying out research in two proprietary institutions—discovers a notable absence of physicians, registered nurses, and technical support services, such as laboratory and x-ray departments.
Focusing on the decision-making process involved in treating acute illnesses, she reveals that one third of the residents did not get appropriate treatment; for many of those who did, it was only because of the determined efforts of family members. In accordance with the general premise of this book, she concludes that the basic problem is the culture of the nursing home environment. Consequently, she suggests that social scientists, health care professionals, elderly persons, families, nursing home officials, and community advocates must work together to alter prevailing attitudes.
For me, however, the problems she uncovers seem to stem more from the pervasive, systemic shortcomings of a corporate-dominated, profit-driven industry—and its cost-cutting measures that engender severe understaffing—rather than an environmental ethos that is subject to change. Gass, for example, describes how, at times, he alone was responsible for his 26 residents or had to share care of 124 people with only one other aide. His entire training consisted of ninety hours of night classes. At the same time, in their pursuit of higher incomes "... doctors visit the nursing charts rather than the patients" (p. 73). Surely a cultural change alone would not produce substantially improved medical care.
Food as a Contested Domain
In a similar vein, Joel Savishinsky sidesteps some of the underlying issues related to malfeasance and poor care by overemphasizing the symbolic and emotional role of food. He studies what he calls a good, decent facility, Elmwood Grove, and determines that food often serves as the center of the institution's social life. Mealtime is a means for residents to connect with other residents and nursing aides, for families to express their ties and personal concerns, and for residents to manifest anger, dependency, and helplessness. "At Elmwood Grove and the other institutions discussed here, food was associated with nurturance, domesticity, reciprocity, sociability, control, autonomy, power, protest, and family, ethnic, and gender identity" (p. 116). Fair enough, food can and does represent a wide range of social, symbolic, nutritional, and emotional characteristics both inside and outside the institutional setting. Savishinsky does an excellent job, with narratives and analysis, of depicting food as a contested domain, a means of displacing other affects and needs. However, he also seems to soft-pedal many of the real, perilous issues associated with nursing home food when he writes: "Collectively, these issues and meanings may be taken as a caveat for critics tempted to jump to quick conclusions about the content and format of nursing home meals" (p. 119).
Notwithstanding, study after study has shown the exceedingly inadequate quantity and quality of food served in our nation's old-age institutions. Indeed, food deprivation, including hunger and malnutrition, has proven to be one of the major nursing home violations found by state regulators across the country (U.S. Senate Special Committee on Aging, 1997). Moreover, government regulations only require a minimum level of calories and nutrients and not appetizing fare. Food tends to be uninviting, tasteless, without texture, watery, overcooked, and occasionally inedible. Hot meals and coffee often are served cold. There are only limited, if any, menu choices. Food generally is not available between meals, except for scheduled snacks. Refrigerators are conspicuously absent in patient rooms, and any treats brought in by relatives and friends are subject to theft. At the same time, residents are herded and shoved to meals by overwhelmed aides. Breakfast, lunch, and dinner can consume a large portion of the day because of long, tedious waiting times, sometimes lasting for hours.
In Nobody's Home, Gass reinforces these observations: At times, residents at his institution are truly hungry. Some don't want to eat at prescribed times or lack an appetite entirely. Others dislike the fare and can find themselves force-fed. A few even forget what food is. A number of his charges can't eat because they have no teeth or are missing their dental bridges. Gass also relates how a resident threw his food on the floor, not out of anger, helplessness, or frustration, but simply for fun: Nursing home inhabitants, who experience few meaningful activities, often are bored.
Negotiating the Role of Families
Both of the books reviewed in this essay discuss the role of family members, although Stafford and his authors place greater emphasis on this aspect of institutional care. Graham D. Rowles and Dallas M. High, in their study of four nursing homes, contend that the institutional culture of each facility, defined by multiple layers of concrete choices, determines each resident's daily existence and quality of life. They state that families have a high level of involvement in decision making and that such participation personalizes and humanizes the life of a resident.
I would maintain, however, that Rowles and High put too much stock in the ability of families to render what they call negotiated and reflexive decisions. To be sure, daughters and spouses bring in cookies and other special treats, arrange for staff to be sensitive to their relative's moods, provide hands-on personal care, launder clothing, straighten up rooms, change beds, bargain for special toiletries, monitor medications, and rearrange pictures. Undoubtedly these activities, in which families take on the role of supplementary staff, are appreciated by their elderly relatives and nursing aides alike, but the authors probably overestimate the effect of families who try to educate staff about their relative's personal characteristics, needs, and ongoing medical conditions. After all, already beleaguered aides, with their onerous work schedules, do not have a great deal of slack time to devote to each resident's idiosyncrasies and wants. In fact, as Gass informs us, they can attend to the squeaky wheels or residents with involved, demanding families only by ignoring their other charges.
Besides, the call by Rowles and High for greater involvement by kin—envisioning the future nursing home as one that is family-focused—fails to acknowledge some stark realities. Many elderly persons enter old-age facilities because they have outlived or exhausted their caregivers. Some adult children are absent from their parents' lives, because of distance or lack of interest. Others visit only occasionally. Given the prevalence of women in the paid workforce, many of whom have children still at home, even adult daughters who want to be intimately involved in the daily lives of their institutionalized mothers and fathers may find it impossible to do so (Olson, 2003).
Renee Rose Shield, who also studies family relationships with nursing aides as a participant–observer as well as through interviews, provides a somewhat more realistic picture of the situation. Though families can be helpful, the CNAs view them as mostly in the way. They report that relatives often have unrealistic expectations about the intensity and quality of care; kin can be overly demanding, picky, and in a few cases negligent. And some visitors treat the workers disrespectfully, as though they were maids. In contrast to Rowles and High, Shield finds that family knowledge about a resident's preferences and habits are not taken into account.
Shield's research indicates that the nonprofit home appears to respect both the residents and their families more than the for-profit institution. In the latter, staff—especially CNAs—appear to be more physically distant from both patients and their kin. Unfortunately, Shield does not explore the political and socioeconomic implications of her findings.
Surprisingly, nursing home administrators in both places suggest that they are selective in their choice of aides, stressing the importance of competence and consideration. Though these seemingly appropriate words portray circumstances as they should be, I find them implausible given the current dearth of nursing aides across the nation. Or, as Gass cynically claims, "The need is so great for this grunt work that virtually anyone who can pass a good urine sample can probably get a job somewhere as an aide" (p. 74).
Shield declares that relatives can improve the workforce situation by keeping close watch on staffing levels: "Administrators listen, especially when families are private-paying customers" (p. 211). Again, her somewhat rosy assessment must be tempered by the reality of the situation: Nearly two thirds of all long-term care residents depend on public funding, mostly Medicaid, to pay for some or all of their nursing home bill. Even about half of private-pay patients—those who initially finance their own care—eventually find themselves relying on government money, usually within a relatively short time after their institutionalization. Such clients probably do not enjoy significant clout.
Margaret A. Perkinson writes about the Family Roles in Nursing Homes project, the purpose of which is to inculcate in families a sense of nursing home culture so that they can work more constructively and meaningfully with patients and aides. She contends that there are multiple realities of care—different notions and expectations between relatives and CNAs about the proper roles of each—that lead to misunderstandings and tension. Accordingly, Perkinson suggests that relatives learn the "rules of the game" in order to play more effectively within the nursing home setting. In my view, her proposal advocates a tacit acceptance if not approval of existing norms, many of which harm patients and workers alike. I'm equally skeptical about her conclusion that families, in collaborative relationships with staff, "may help to transform nursing homes into homes of nurturing that address all levels of residents' needs" (pp. 260–261). In tandem with the general motif of Gray Areas, Perkinson ignores the basic causes of nursing home ills. In effect, she seems to exculpate nursing homes for their poor quality care by placing responsibility squarely on kin: "Families who could not develop constructive and meaningful roles within the nursing home were sometimes reduced to looking for inadequacies in the system and in the care their relative received" (p. 259).
Specialized Alzheimer Care: Boon or Boondoggle?
J. Neil Henderson's chapter in Gray Areas takes a somewhat different tack from the rest of the book. He clearly is unwilling to downplay the readiness of nursing home operators to cash in on patients and their families. His work is concerned with specialized Alzheimer's Units (AUs) and the contradiction between their limited therapeutic efficacy and their steady proliferation over the last two decades. Henderson argues: "Clearly, factors other than evidence-based scientific research underlie the rationalization of special care for persons with dementia" (p. 154). He carefully spells out some key issues related to AUs: the vulnerability of cognitively impaired elderly personss and their families; the warehousing of difficult-to-manage patients with dementia; the lack of AU-specific staff training; the inherent incompatibility between the behavioral and medical models of care; and staff burnout and high turnover. Henderson pointedly notes the central role of profit-making in generating and sustaining these special units despite what he views as their current ineffectiveness. Among other benefits to nursing home owners, AUs serve to ease certificate of need (CON) restrictions (allowing the construction of more beds) as well as to exploit a new and growing market of desperate older people and their caregivers.
Frankly, I'm not sure how widely this perspective is shared among social gerontologists, though I suspect that most would agree that such units are not fully meeting the complex needs of dementia patients and their families. It is also interesting that Gass, as a nursing assistant, has a somewhat different take on the situation. He observes: "Something magical seems to happen when Alzheimer's patients mix exclusively with each other. They get lost in a moment that has no name. They communicate in some primal way and settle into a language of tone, cadence, and emotion. Our Alzheimer's wing is by far the happiest hall in the building" (p. 80).
Concluding Observations
Over the last four decades, we have witnessed substandard, sometimes abusive conditions within our nation's nursing homes. For the most part, nursing aides struggle in a harsh workplace environment. Warehoused older people experience dehumanizing, depersonalizing care. The historical political setting has been one of cronyism, indifference, negligence, or worse. Periodically, public officials promulgate additional rules and regulations, many of which are disregarded, not adequately enforced or, in some cases, produce a worsened effect. Nursing homes are perfunctorily surveyed, inspected, and investigated; criminal indictments and civil suits sometimes lead to jail terms and/or financial penalties. Regardless, government endeavors to reform the industry have proven illusory band aids that obscure the inherent contradiction between good care and market-driven concerns. Despite years of oversight and the infusion of increasing amounts of public dollars annually, the stubborn fact is that the industry is as bad as ever.
Most of the chapters in Gray Areas: Ethnographic Encounters with Nursing Home Culture attempt to find ways to render our nursing homes more humane and effective not through structural transformation but by means of altered attitudes, cultural understanding, family involvement, mutual support among the stakeholders, and other such surface changes within the nursing home environment. Many of their suggested improvements would, in fact, make life a bit better for those elderly persons forced into nursing homes. It is tempting to gloss over the deeply rooted problems; after all, large numbers of poor—and newly impoverished—very old, frail elderly adults have no place else to go.
Sadly, nursing homes as they exist today are institutionally incapable of delivering the quality of care our frail elderly adults deserve or the decent working conditions their paid caregivers require. These facilities are big business: Their main incentive is, and has always been, to reap high monetary returns, whether through real estate schemes, mergers and acquisitions, stock-market manipulations, financial fraud, and/or skimping on essential patient and staff needs. They embody the worst aspects of privatization that is so championed today by the new conservative forces. Nursing home lobbying power, both at the state and national levels, assures that their transgressions will continue to be papered over with more ineffective hearings and regulations. Even worse, public officials are now almost entirely focused on cost-cutting efforts, at the expense of quality-of-care concerns (Olson, 2003).
Thomas Edward Gass does a credible, even admirable job of detailing the institutional realities of nursing home life, but we need more than a litany of deplorable conditions, wrongdoings, and fleeting gentle moments between overworked aides and their lonely charges. We also must reach beyond cultural change in our nursing homes, as suggested by Stafford and his authors, to a more fundamental alteration in the political atmosphere of the larger society, especially our escalating fetishism for individualism, privatization, decentralization, deregulation, and market-driven approaches to social welfare. Over the last several decades, we have experienced the steady abdication of national responsibility for basic social and community needs, an eroding of years of worker gains, a growing inequality of wealth, an intensifying commodification of public services, and an ongoing devaluation of caregiving, both paid and unpaid. In this climate I have serious doubts as to whether we can restructure our long-term care system, especially nursing homes, to meet the real needs of frail elderly persons, families, and their paid help.
References
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