Nursing Facility Residents

Nursing facility residents typically are female, white, and very old (in their eighties). These residents tend to suffer from multiple chronic diseases and functional impairments (AHCA, 1994). More than half enter the nursing facility from an acute-care hospital (Lewis et al., 1985). Under such circumstances, illness, time pressures, and constraints on available nursing facility beds means that they or their agents may not have the opportunity to select a nursing facility carefully. Too often, nursing facility residents have not chosen to enter a particular nursing facility or any facility at all (Coulton et al., 1989; Reinardy, 1992; Thuras and Kane, in press).

In addition to their need for LTC services, some characteristics of nursing facility residents render them vulnerable to abuse, exploitation, or neglect (Kane and Caplan, 1990). Substantial proportions of nursing facility residents suffer some degree of cognitive impairment from conditions such as Alzheimer's disease or other dementias. Many nursing facility residents suffer sensory impairments, which interfere with their vision, hearing, speech, and ability to communicate. Some are bed- or chair-bound because of severe or deteriorating diseases that affect mobility. Many nursing facility residents have interested and involved friends and family members. However, elderly people who never married, who have no children, or who have no surviving children are overrepresented in nursing facilities.

Nursing facility residents are often poor, and this makes them especially vulnerable. The approximately 50 percent of residents who receive some payment from Medicaid have exhausted their assets, and, although the amount varies from state to state, they are generally allowed to keep only about $40 a month for personal needs (such as clothing, cigarettes, and phone calls). Others have lost effective control of their financial affairs. Typically, nursing facilities identify a representative payee other than the resident to pay bills. Because of this some residents are also at risk of financial exploitation.

Despite the common profile described above, nursing facility residents also differ markedly from each other in many ways. They differ in their interests, preferences, talents, education, life experiences, cultural backgrounds, and languages. Other differences among residents include: the reason for admission to the nursing facility, the anticipated length of stay, and expected prognosis. Although the average length of stay in a nursing facility is about a year, half of all people admitted to a nursing facility stay three months or less, and of these, half again die in the facility or after a short hospitalization. In contrast, some people stay for a long time. Kemper and Murtaugh (1991) found that people surviving to age 65 had a 42 percent probability of an admission to a nursing facility, an 11 percent probability of staying in a nursing facility for more than a year, and a 5 percent probability of staying in a nursing facility for five years or more.

Within the short-stay group of nursing facility residents, some people receive short-term rehabilitation for conditions such as hip fracture and stroke, and some people receive terminal care or hospice services. These residents are less likely than those who stay for longer periods to suffer cognitive impairments, and their stay is more likely to be funded by Medicare. Within the long-stay group, some people are cognitively intact but functionally very impaired (perhaps because of conditions such as multiple sclerosis, pulmonary disease, or advanced arthritis), and some people are cognitively impaired but may well be ambulatory and capable and desirous of considerable activity. Some nursing facilities also house residents who are comatose, in vegetative states, as well as people on life support systems such as ventilators. Each of these populations—rehabilitation clients, hospice clients, people in comas, long-stay residents with only physical illnesses, and long-stay residents with cognitive impairments—and their concerned agents and relatives are likely to need advocates, but the characteristic problems presented may differ dramatically, as may the strategies of the advocates.

Although the average age of a nursing facility resident is in the mid-eighties, younger people also live in nursing facilities. Many are chronically mentally ill or developmentally disabled. Some of these younger, long-stay residents suffer from spinal cord injuries or deteriorating neurological diseases. In many areas of the country, persons with acquired immunodeficiency syndrome (AIDS) may live in nursing facilities when their disease reaches the advanced stage. Characteristic needs for advocacy may apply to some of these vulnerable populations. In addition, people under 60 (especially those who are disabled but not sick) are known to have particular problems achieving a satisfactory lifestyle in nursing facilities.

Residents of Board and Care Homes and Other Residential Settings

Between 600,000 and one million elderly and disabled persons are estimated to reside in B&C homes, also known as domiciliary care homes, personal care homes, residential care facilities, homes for the aging, rest homes, adult congregate living facilities, assisted living facilities, and adult foster care homes. These facilities provide residents with food, shelter, and 24-hour supervision or protective oversight. Usually they provide some form of supportive service or assistance as well. Such facilities vary significantly in size (from 2 beds to more than 1,000), monthly charge (from $383 to more than $4,000), and range and intensity of services provided (from no services to daily nursing care). Some facilities are targeted or marketed to younger persons with chronic mental illness or developmental disabilities, others are targeted to the elderly, and yet others serve a mixed-age population. The quality of care and life provided by these facilities to residents also varies (Dittmar and Smith, 1983; Reisacher, 1985; Mor et al., 1986; Eckert et al., 1987; U.S. House of Representatives, 1989; Hawes et al., 1993).

Further, the payment systems and regulatory structures that apply to these facilities also vary enormously. Within a single state, multiple classes of facilities can exist, each with its own target population and its own set of rates and regulations concerning staffing, admissions, and standards of care. In at least 10 states, multiple agencies are responsible for licensing various types of B&C homes that serve a primarily elderly or mixed-age population of residents; in many states, entirely separate classes of homes are licensed by departments of mental health or developmental disabilities (Hawes et al., 1993).

In 1990 more than 32,000 licensed B&C homes across the country provided services to “a primarily elderly/mixed population of residents,” which includes older persons, persons with chronic mental illness, and persons with mental retardation or developmental disabilities (Hawes et al., 1993). This estimate excludes homes that are licensed by departments of mental health for special populations (e.g., homes serving only persons with chronic mental illness or group homes for persons with developmental disabilities), as well as homes specifically licensed for other special populations, such as children and persons receiving substance abuse treatment. Adding these other categories of homes probably brings the total number of B&C homes in the nation to more than 36,000 facilities (DHHS, 1982; Clark et al., 1994). In addition, an unknown number of unlicensed B&C homes are in operation. Such homes include both illegally unlicensed homes that avoid licensure altogether and legally unlicensed homes that fall outside the licensing requirements of particular states. Estimates place the number of unlicensed B&C homes as high as 28,000 (U.S. House of Representatives, 1989).

Not all B&C homes are small and homelike. A recent study of 10 states found that, while 67 percent of licensed homes are small (2–10 beds), fully two-thirds of all beds are found in medium to large-sized homes (>10 beds). Indeed, one-third of all beds are found in homes with more than 50 beds. Much the same holds true for unlicensed homes, if one includes in this group other retirement communities and congregate settings (including apartments) that provide the same type of services as licensed B&C homes.³ In these unlicensed facilities, more than half the residents live in facilities with more than 50 beds (Hawes et al., 1994).

Compared with nursing facility residents, B&C residents are more likely to be younger and more functionally independent. However, studies have found significant levels of disability among residents, and both anecdotal reports and more recent studies suggest a population that is aging and that experiences significant levels of chronic disease, functional impairment, cognitive impairment, and chronic mental illness (Hawes et al., 1994).

Preliminary results from a 1993 study by the Research Triangle Institute and the Assistant Secretary for Planning and Evaluation (RTI/ASPE) indicate that, in the 10 study states, 30 percent of B&C residents were over 84 and another 30 percent were between the ages of 75 and 84 (Hawes et al., 1994). Only 20 percent of the residents in the RTI/ASPE study were under 65 years of age (Hawes et al., 1994). These results suggest that residents entering B&C homes are older and that much of the B&C population is aging in place. For example, many residents placed in B&C homes as a result of the deinstitutionalization movement of the late 1960s and 1970s are now passing into old age and are increasingly in need of traditional elderly supportive services in addition to mental health services (Seltzer and Kraus, 1987).

Similarly, the level of chronic disease and dependency in ADLs is lower among B&C residents than among nursing facility residents, but the types and levels of impairment are noteworthy. One-third of residents reported some form of degenerative joint disease, one-quarter reported circulatory and heart disorders, one-quarter reported hypertension, and one-seventh reported respiratory disorders (Dittmar and Smith, 1983). Estimates of impairments in mobility sufficient to limit physical activity outside the facility range from 31 to 44 percent. Approximately half of all elderly B&C residents needed help with at least one ADL (Dittmar and Smith, 1983; Mor et al., 1986).

Recent data imply that the level of impairment for residents in B&C homes may have increased over the past decade. Studies in the early 1980s found less than 10 percent of residents were incontinent of bladder, whereas a 1993 study found over 20 percent were incontinent of bladder (Hawes et al., 1994). Dittmar and Smith (1983) found only 3 percent of residents using wheelchairs and only 2 percent bed- or chair-bound in 1983, but again, 10 years later Hawes and colleagues (1994) found that 15 percent of residents were using wheelchairs and 7 percent were bed- or chair-bound.

These studies also suggest a level of cognitive impairment that, while lower than that found in nursing facilities, is still significant. Estimates of mild “confusion” to mild cognitive impairment ranged from 30 to 39 percent (Dittmar and Smith, 1983; Reisacher, 1985; Mor et al., 1986). Nelson (1987) found that 20 percent of the residents in B&C homes were severely impaired, 73 percent experienced some level of mental impairment, and 28 percent were identified by the physicians as having dementia. Hawes and colleagues (1994) found just over one-third of the residents presented with moderate to severe cognitive impairment.

Residents of B&C homes also exhibit a high level of chronic mental illness. Even among homes serving a primarily elderly population, studies consistently find that between 10 and 15 percent of residents in these homes are mentally retarded or experience developmental disabilities and approximately 33 percent are diagnosed as having a chronic mental illness (Dittmar and Smith, 1983; Mor et al., 1986; Hawes et al., 1994).

Quality of Care

In comparison to hospitals, nursing facilities and, particularly, B&C homes are low-technology environments. Nevertheless, these settings (including subacute care units in nursing facilities) provide medical and nursing care that must still meet a standard of technical adequacy. If various medical and nursing protocols (e.g., for administration of medications, management of catheters, monitoring of specific diagnostic conditions, skin care of bed-bound people) are ignored, outcomes for residents will suffer.

As early as the 1970s, federal demonstration projects in nursing facility quality assurance (Kane et al., 1979) established protocols for adequate care of common problems and conditions seen in nursing facilities. Since that time, the typical nursing facility resident has become more frail, and many nursing facilities are undertaking more difficult procedures and caring for sicker people. The resident is indeed also a “patient” if he or she has just been discharged from a hospital after a stroke or a heart attack and still needs skilled treatment and monitoring. Prospective hospital payment, instituted in the mid-1980s, has led to quicker and sicker hospital discharges and more physically vulnerable residents. Ombudsman advocacy programs may have to become increasingly sophisticated about medical and nursing procedures. Ombudsmen may need access to experts in health care, including geriatricians, to assess complaints and determine investigatory courses to take and remedies to suggest individually and systemically.

Structural, process, or outcome criteria can be used as measures of quality of care (Donabedian, 1966). Structural criteria are those that pertain to an entire organization. For example, structural criteria such as the training and supervision of staff, the record system, the procedures for infection control, and the quality of the physical plant and equipment may all reasonably be thought to affect the processes of care and, hence, subsequent health and functional outcomes. While the current emphasis is in resident outcomes and evaluation of the actual care provided, historically, nursing facility regulations relied heavily on such criteria; B&C regulations have remained at a far less developed state. Process criteria pertain to the appropriate and correct performance of specific procedures. One can ask about a wide range of procedures: Were they necessary? Were they performed correctly? One can ask certain questions about specific procedures as well. For example, regarding antibiotic medications, one can ask: Do all those receiving antibiotics need them? Do some people who do not receive antibiotics need them? Were the antibiotics given correctly (the right drug, the right dose, the right conditions, the right monitoring for side-effects)? Outcome measures are typically considered to be the end results of health care in terms of biologic, psychologic, and functioning variables. They may include various health indicators such as death rates, rates of illness, rates of specific complications of illness, functional abilities, and pain or discomfort.

The often ambiguous role of the physician, who may be a consultant or outside practitioner and whose performance cannot readily be controlled by the facility, complicates the maintenance of quality of care in residential settings. Other professional personnel (e.g., psychologists, physical therapists, and speech therapists) may also be outside contractors, especially in small facilities. Patterns for delivering primary health care in B&C homes and other residential facilities are even less well supervised, and critics fear that inadequate attention is paid to residents' existing health problems and new ones that may arise (U.S. House of Representatives, 1989). For example, the presence of or need for physicians and other health professionals who understand geriatrics in nursing facilities and B&C homes may be a factor in appraising the patterns of complaints and issues of quality of care in LTC facilities.

Quality of Life

Quality of life is an expansive topic that encompasses broad notions of human existence. Highly personal views about one's environment and living situation, as well as profound philosophical, religious, and spiritual beliefs and attitudes about life and death inform each person's position on the subject (Lohr, 1992). Anthropological and ethnographic studies in nursing facilities point to problems in achieving a reasonable quality of life (Shield, 1988; Lidz et al., 1992; Gubrium, 1993). After all, a nursing facility is more than a setting in which residents receive care, it is their home, although for some it is only a temporary home. Unfortunately, however, the physical structure of most nursing facilities allows for little privacy, especially as most residents must share rooms. Partly because of routines and conventions—many of which are providers' responses to regulations—and partly because of room sharing, residents maintain little personal control over many aspects of their daily lives. Disputes arise over matters such as roommate and table-mate selection. Residents who are cognitively intact complain about enforced proximity to residents who are cognitively impaired. Residents who are cognitively impaired may be restricted in their activities, both for their own safety and so that they do not intrude on the space and possessions of others. Many residents may lack meaningful activities. Kane and Caplan (1990) pointed out the myriad difficulties of developing normal lifestyles in traditional nursing facilities given heterogeneous populations, rules and regulations that govern conduct of residents, and lack of physical space and privacy.

In 1987, partly as a result of an earlier IOM study (1986), Congress enacted a comprehensive nursing facility reform law that emphasized the need to ensure that residents achieve a good quality of life. Mandates in the law included new general conditions or standards for nursing facilities to meet regarding residents' rights and quality of life. The same reform required that those who inspect nursing facilities observe and speak to samples of residents themselves to determine whether these conditions are met, rather than relying solely on medical records and staff reports.

Despite the substantial progress of the 1987 reform, quality of life is an elusive concept to define and to measure in the nursing facility or LTC context. It encompasses such constructs as dignity, satisfaction, social involvement, autonomy, and happiness. For those who cannot participate in an interview because of cognitive or sensory impairments, the difficulties of measuring quality of life are immense. Even cognitively intact residents may not report dissatisfaction for fear of reprisals or because they are unclear about the standard of care they should expect. Also, how does one balance quality of life as illustrated by the constructs listed above with narrower concepts about adequate quality of care and the safety of residents? Although facilities must respect residents' choices, in some facilities concerns for safety and physical well-being continue to overrule residents' preferences for particular lifestyles. Nursing facilities' concerns about legal and regulatory liability often militate toward safety first (Kapp, 1987).

Residential settings other than nursing facilities may permit more personal autonomy for residents (Mollica et al., 1992; Kane and Wilson, 1993), in part because fewer standards prevail about staffing, physical care, and safety. Some commentators are concerned, however, that such environments insufficiently protect many vulnerable adults. The hope is that new models of residential LTC will be developed that allow persons with severe disabilities to receive care while leading a normal lifestyle and achieving privacy and control over their immediate environment. Although good models of such care exist, perennial scandals suggest that many B&C homes offer very little service, in environments that fall far short of minimal adequacy.

Quality of life, like quality of care, can be measured by structure, process, and outcomes. Indeed, Wilson (1993), writing about assisted living, argues that some structural standards for the environment are essential to autonomy and a normal lifestyle. She advocates private occupancy rooms with full baths, kitchenettes, locking doors, and individual temperature controls. Procedures for handling such issues as individualized care planning, resident governance, complaints and grievances, lost property, room transfers, and informed consent may well facilitate quality of life; LTC ombudsmen in some jurisdictions have been active in efforts to establish such procedures. Also, staff behavior that is respectful of the dignity and choice of residents is a key factor in achieving a high standard of quality of life. However, quality of life is best measured by the subjective well-being and satisfaction of each individual resident.