Essay on Nursing Home Environments

At present there are over 19,000 nursing homes in the United States (approximately 75 percent of them proprietary, 20 percent nonprofit, and 5 percent government-operated). The annual cost per resident in these homes ranges from an average of $28,000 in the northeastern states to $20,000 in the south. About 51 percent of such costs is paid directly by the elderly and their families; Medicaid covers about 44 percent, Medicare less than 2 percent, private insurance about 1 percent, and other government sources the rest. The small amount of coverage from Medicare and private insurance means that nursing home care is now the largest single health care cost paid for “out-of-pocket” by the elderly who do not rely on Medicaid.

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Facing such catastrophic costs, about 90 percent of the single elderly deplete their financial resources within a year after entering a nursing home; 50 percent of elderly couples face such depletion six months after one of them enters a nursing home. It is at this point, after “spend-down” to poverty levels determined by the individual states, that the elderly become eligible for Medicaid coverage of nursing home costs.

The number of elderly navigating these fiscal straits is already significant: 2.3 million now reside in nursing homes during the course of a year. With the continued aging of our population, this number is projected to increase by 75 percent over the next thirty years. In quick, calculable terms, this means that one in four individuals surviving to age sixty-five can expect to spend at least some time in a nursing home. The amount of time will vary–from short, recuperative stays to residency that may be permanent, extending months or years to the death of the individual. These statistics indicate the significant likelihood of nursing home placement for many of us, and when we factor in the shifting, highly “fluid” quality of the institutions in which we will be placed, it is not difficult to see why the nursing home is such a fearful and perplexing prospect.

The age of elderly nursing home residents ranges from sixty-five to one hundred and over. Average age has been increasing and is now about eighty-four, reflecting over the last decade a steady aging of our population that will intensify well into the middle of the next century. In terms of health status, nursing home residents generally suffer significant functional impairment and therefore need help with one or more activities of daily living–or ADLs, as they are called. Impairments in vision, hearing, and speech are common among residents, as are cognitive impairments. Approximately 63 percent of nursing home residents are reported to suffer from loss of memory or disorientation; about 47 percent suffer from serious dementia or organic brain damage. In terms of social and demographic factors, the majority of nursing home residents are women (only 25 percent are male) and widowed or single. They are also poor–either upon admission or as a result of a postadmission spend-down of resources to meet the high cost of care.

This negative image is reinforced by some deep-seated cultural values. For a society passionate about personal independence and self-sufficiency, nursing homes are too easily seen as habitations for diminishment and dependency. For a culture that prizes curative medicine and the dream of “youthful aging,” nursing homes are places of intractable, therefore intolerable, frailty. For a culture with deep anti-institutional biases and often romanticized versions of “family” and the freedoms of “home,” nursing homes are especially suspect. They are “total institutions” where personal freedom, privacy, and range of choice have little chance. It is no surprise, then, that our general cultural wisdom warns us to avoid the nursing home at all costs.

This negative image is powerful not only for the elderly but also for families who face the pain and stigma of “institutionalizing” one of their members. Here the negative image of the nursing home is reinforced by cultural expectations that families should always take care of their frail elderly. Such expectations are based on spousal and filial obligations, on the special relationships and ties of family life, on the priority of private over public responsibility for the elderly. Beyond notions of obligation, deeper impetus for such care comes, of course, from shared lives and burdens, from familial concern for the autonomy, dignity, and happiness of its elderly members, from a sense that the dependencies of frailty, like those of childhood, are best sheltered and supported in the “close” of the family.

But the cultural expectations nurtured by these values can produce a kind of moral aversion to nursing homes as places for “putting away” an elderly family member. Thus, nursing home admission is equated with familial abandonment, and the relatively full rosters of most nursing homes is proof of yet another breakdown of the family in the United States. Despite numerous studies that point to heavy care of the elderly as the norm in family relationships, the fiction persists that families continue, in large numbers, to “abandon” their elderly to nursing homes.

Eliminating inappropriate institutionalization of the elderly, especially in the face of mounting health care costs, is surely a morally, socially, and fiscally defensible goal, but if nursing homes are subjected to a general principle of avoidance they are doomed to be places of limited, if not parched, possibility. If nursing homes are seen only as a last, lamentable resort for the care of the elderly, then they will in effect be the Bedlams of our aging society, however technologized and over-regulated we make them. There will be little enthusiasm in the public mind or in the mills of policy to define the “good institution,” to recognize what human ends and needs the nursing home irreplaceably serves. Neither as individuals nor as a society will we develop a positive consensus about when and for whom nursing home care is really the best option, or how, for some individuals, institutional care can best sustain the last of life. Instead we will struggle to avoid these institutions, continue to fund them publicly only for the impoverished, and regulate them adversarially–because we have declared them essentially places of incapacity and abandonment. Those who live and work in nursing homes may know the reality of the good institution, but their experience runs against the grain of the cultural image and against the dominant priorities of the health care system.

Confronting decisions about institutional care, the elderly and their families must contend not only with our culture’s near taboo against nursing homes, but also with the pressures and complexities of the health care system. Over the last five years, Medicare’s prospective payment system has effectively shortened the hospital stay for elderly patients. While this has led to cost savings in acute care, it has done so through “quicker and sicker” hospital discharges of the elderly. As a consequence, pressures have intensified on hospitals, as well as on the elderly and their families, to find adequate, often high-level, long-term care. In many areas of the country the number of nursing home beds has not kept pace with the growth of the elderly population. Moreover, Medicare and Medicaid coverage of formal home care services is tightly rationed; private payment for these services can be prohibitively expensive; and many families exhaust their own fiscal and other resources attempting to provide care themselves.

The vey terminology of the nursing home offers some clues to these images. Being a “resident” in a nursing “home” is quite different from being a patient in a hospital. Despite the domestic descriptors, “residency” can prove more fully and finally disruptive than hospitalization. Admission to a nursing home separates one, sometimes permanently, from the personal and social contexts of one’s previous life. This home can seem an alien place, filled with the frail and incapacitated, where one’s past has no roots or recognition, where one must join others, mostly strangers, in attempting to live a private life in a public place. At its worst this home is thick with contiguity but thin in community. Here, personal choice and social ambit shrink in the midst of unchosen others, in dependency on caregivers whose authority governs even the minutiae of daily life.

The potentially invasive and disenfranchising impact of the nursing home is perhaps best summed up in Erving Goffman’s classic account of the “total institution.” Total institutions are characterized by their all-encompassing, highly controlled settings and their pervasive authority structure. Daily life in a total institution is tightly scheduled and is organized around “batch processing” of inmates or residents. Managing the daily lives of a large number of persons in a relatively small space with limited resources leads, almost inescapably, to surveillance and control of behavior, hierarchical staff-inmate interaction, and the dominance of routines that serve the institution’s efficiency. In its closeting and control of the individual, the total institution acts, finally, as a barrier to the outside world and the previous identities and life activities of its inhabitants.

A simple categorization of nursing homes as irredeemably “total” institutions would be facile and inaccurate. On the other hand, the model of the total institution can be analytically useful. It offers a stark indictment of the poor nursing home and a sharp, if negative, template for the good nursing home. Accordingly, the good home would be one that resists institutional constraint and control, that works against the collectivization of residents, that checks the primacy of the institutional agenda over the interests of residents. In terms of fundamental ethical categories, this would mean a commitment not only to the good care and safety of residents but also to their autonomy, independence, and dignity. At the same time, the good nursing home must respond to counterbalancing values: the common good, the mutual responsibilities of residents, the requirements of equity and justice, the prudential use of limited resources, the obligations imposed by legal and regulatory requirements.

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