Office of the DHHS Inspector General

The Office of the Inspector General (OIG) in the U.S. Department of Health and Human Services reviewed data from the Health Care Financing Administration's (HCFA) Online Survey Certification and Reporting System (OSCAR) for one full survey cycle (1997–1998) in 10 states. The OIG found 4,707 abuse complaints, involving nearly one-third of the facilities certified to participate in the Medicare or Medicaid programs.⁸

Centers for Medicare and Medicaid Services

The Centers for Medicare and Medicaid Services (CMS, formerly HCFA) has reported even more current data on abuse in nursing homes. In its Quarterly Report on the Progress of the Nursing Home Initiative for January 2001, CMS reported the rate of citations for various types of deficiencies, including abuse (U.S. Department of Health and Human Services, Center for Medicare and Medicaid Services, 2001). These citations do not represent prevalence measures (e.g., the proportion of residents who were abused); however, they do suggest the potential severity of the problem. The CMS/HCFA data indicated an increase in citations for deficiencies related to abuse between 1988 and 2000. Although the data show an increase in citations for abuse, the increase has been seen in deficiencies related to facility processes rather than to actual, documented abuse of residents. Four deficiencies, listed below, are related to abuse. Only one (F223) is cited when there is a substantiated incident of abuse.

• F223 is cited when a facility fails to protect its residents from abuse;
• F224 is cited when a facility fails to write and use policies that forbid mistreatment, neglect, abuse, and theft of resident's property;
• F225 is cited when a facility fails to hire employees without histories of abusive behaviors or fails to report and investigate allegations of abuse;
• F226 is cited when a facility fails to implement the policies it writes to forbid mistreatment, neglect, abuse, and misappropriation.

Changes in the rates of these deficiencies across the first quarters of 1998, 1999, and 2000 are displayed in Figure 14-1. These rates represent the proportion of facilities that were cited for resident abuse. In 1999, for example, 326 facilities were cited for F223, the deficiency representing substantiated cases of abuse. However, it is important to note that these probably represent minimal estimates of abuse because, as discussed below, very few allegations are substantiated. Furthermore, even among substantiated cases of abuse and neglect, relatively few result in a deficiency citation (Hawes et al., 2001).

FIGURE 14-1

Rates of deficiency citations for abuse, 1988–2000.

In addition to increases in substantiated cases of abuse for which deficiencies are cited, there have been significant increases in citations for failure to hire persons without a history of abusive behaviors or to adequately investigate and report allegations of abuse.

These reported increases are more serious than the data suggest for two main reasons. First, as discussed later, most cases are not substantiated, often for reasons having little to do with the likely truth of the allegation. Second, as also discussed later, even when abuse allegations are substantiated, there is rarely a deficiency citation against the facility that would be recorded as an “F-Tag.” Third, in most states the agencies responsible for investigating abuse and neglect in nursing homes acknowledge their dependence on such reports from facilities, as illustrated by the following quote from a state official responsible for state investigations of abuse and neglect:

We are struggling with [the] responsibility to do our investigations and how reliant we are on facility investigations. … [W]e would need more staff to do all investigations. To do an on-site investigation to verify a facility's investigation takes us a day. To do an investigation from scratch would take us three days.

Nurse Aide Registry Director (Hawes et al., 2001)

Indeed, the bulk of the allegations of abuse in most states start with reports filed by facilities (Hawes et al., 2001). Some agencies reported concern that facilities may fail to report cases, simply discharging the CNA in question. If this view is correct and some facilities are failing to report allegations or to investigate them adequately, there may be large numbers of unreported cases of resident abuse or neglect.

U.S. House of Representatives, Committee on Government Reform

Recently, the Minority Staff of the Special Investigations Division of the House Committee on Government Reform issued a report asserting that abuse of residents “is a major problem in U.S. nursing homes” (U.S. House of Representatives, 2001). This report analyzed data from the OSCAR system and the nursing home complaint database covering all surveys and complaint investigations during a 2-year period (i.e., January 1999 through January 2000) and included all four of the deficiency codes related to abuse (F223, 224, 225, and 226). The report concluded:

• During the 2-year period, nearly one-third of all certified facilities had been cited for some type of abuse violation that had the potential to cause harm or had actually caused harm to a nursing home resident.
• Ten percent of the nursing homes in the United States were cited for abuse violations that caused actual harm to residents or placed them in immediate jeopardy of death or serious injury.
• The percentage of homes with abuse violations has been increasing, probably as a result, at least in part, of more stringent reporting requirements and increased vulnerability among residents.
• The cases involving abuse included physical and sexual abuse as well as verbal abuse involving threats and humiliation.

Resident and Family Reports of Neglect

Ninety-five percent of the residents who were interviewed as part of the Atlanta Long-Term Care Ombudsman study reported that they had experienced neglect or witnessed other residents being neglected (Atlanta Long-Term Care Ombudsman Program, 2000). The kinds of things they reported included residents being left wet or soiled with feces; not being turned and positioned, which can lead to pressure ulcers; shutting off call lights without helping the resident seeking assistance; not receiving enough help at mealtimes; and residents who needed help with eating and drinking or not getting enough to eat or drink. In focus group interviews, families also discussed instances of neglect, including residents who needed help with eating not receiving it and dying of malnutrition and dehydration, residents being put in tubs of water that were too hot and being scalded, and residents being left for hours or even days in wet and soiled clothing and bedding. They also reported incidents in which pressure ulcers were improperly treated, leading to sepsis and death.

CNA Reports of Neglect

In focus group interviews, CNAs reported that neglect was not unusual. They reported that in times of shortstaffing, neglect of range of motion exercises to prevent contractures, failure to turn and reposition to prevent development of pressure ulcers, neglect of residents' hydration needs (e.g., not taking them fresh water or not reminding cognitively impaired residents to drink), and giving residents too little help with eating were the most common areas of neglect (Hawes et al., 2001). In a survey of CNAs preparing to go through a special training session aimed at preventing abuse and neglect, 37 percent of the CNAs reported they had seen neglect of a resident's care needs (MacDonald, 2000).

Ombudsman Reports

The 1998 compilation of complaints received by the state Long-Term Care Ombudsman program reported that 27 percent of the complaints ombudsmen received had to do with the types of inadequate care that are typically thought of as neglect (e.g., improper handling, accidents, neglected personal hygiene, and unheeded requests for assistance) (Administration on Aging, 2000). Further, the U.S. Department of Health and Human Services, OIG (1999a) found that ombudsman complaints about quality of care have also been increasing in recent years.

Survey Deficiencies

The U.S. Department of Health and Human Services, OIG (1999a) found an increase in the frequency with which deficiencies were cited for neglect and poor quality-of-care. In recent years, deficiency citations increased in 13 of 25 quality of care areas, including such problems as improper care for pressure ulcers, inadequate care to maximize physical functioning in activities of daily living (ADL), and lack of adequate supervision to prevent accidents.

Research Studies

Other studies have raised similar concerns. For example, in a detailed review of records of a sample of residents who died in California nursing homes, U.S. General Accounting Office (1999a) found that more than half had received unacceptable care, including lack of appropriate attention to dramatic, unplanned weight loss, failure to properly treat pressure ulcers, and failure to manage pain. This was a follow-up to a review of deaths from 1986 to 1993 in California nursing homes by an attorney who argued that 7 percent of all residents died as a result of severe neglect (Thompson, 1997). A review of records and care practices in 14 facilities in 11 states, conducted with protocols similar to the GAO's, documented inadequate treatment in one-third of the facilities in the areas of nutritional support, pressure ulcer care, prevention of contractures, pain management, and personal assistance (Johnson and Kramer, 1998). Other studies and hearings by the U.S. Senate Special Committee on Aging have documented similar problems (Bernabei et al., 1998; Blaum et al., 1995; Fries et al., 1997; Hawes et al., 1997; Hawes, 1997; Kayser-Jones, 1997; Phillips et al., 1997). For example, Blaum and her colleagues (1995) found that a major predictor of unintended weight loss and low body-mass index among nursing home residents was that a resident needed help with eating. Similarly, Kayser-Jones and Schell (1997) found that many facilities were so understaffed that even though trays were taken into rooms, residents were not fed.

Underreporting by Health Care Professionals

There have been relatively few studies of elder abuse, compared to child abuse (Kleinschmidt et al., 1997; Lachs and Pillemer, 1995). However, there is some evidence that physicians rarely or never report suspected cases of elder abuse involving nursing home residents (U.S. Department of Health and Human Services, OIG, 1990b). Other studies have had similar findings with regard to staff in hospitals. Several studies have found that hospital and emergency department (ED) personnel, such as physicians and nurses, were often unfamiliar with mandatory elder abuse reporting laws (Blakely and Dolon, 1991; Clark-Daniels et al., 1990; Wolf, 1988). In addition, one study found that only 27 percent of emergency physicians had established protocols for identifying and addressing suspected cases of elder abuse (MacNamara et al., 1992). Furthermore, relatively few cases of elder abuse are reported to authorities (Pillemer and Finkelhor, 1988). The same is true for other health care professionals who are in a position to detect abuse and neglect.

A study of emergency department (ED) nurses in Florida found that 83 percent reported seeing what they thought was evidence of abuse of older persons admitted to an emergency room for treatment, but only 36 percent had reported abuse (Reynolds and Stanton, 1983). Two more recent studies demonstrated similar findings, as displayed in Table 14-6. The studies reported on interviews with ED nurses, home health agency nurses, and nurses who worked in acute care (i.e., medical or surgical units) or a long-term psychiatric facility. As shown, most nurses reported observing abuse, including instances of severe injuries, such as skull fractures, sexual assault, bites, and severe bruising (Pettee, 1997). Yet in both studies, there was a significant discrepancy between the proportion of nurses who had observed suspected abuse and those who had reported it (e.g., 73 percent reportedly observed abuse but only 36 percent had reported it). In addition, both studies found that the majority of nurses (59 percent and 66 percent, respectively) were unaware of laws on elder abuse, and a surprising number of nurses (43 percent) working in EDs or home health were unaware of state mandatory reporting requirements.

TABLE 14-6

Nurse Observation and Reporting.

Underreporting by Residents and Family Members

There is also evidence from surveys and focus group interviews of underreporting by residents and family members (Atlanta Long-Term Care Ombudsman Program, 2000; Bowers et al., 2001; Hawes et al., 2001; Pettee, 1997). In focus group interviews, surveys, and individual interviews, some residents and family members expressed a general reluctance to complain, evidently feeling that there were other mechanisms for resolving problems, such as working through the resident and family councils or speaking with the administrator. Others feared that a formal complaint might generate retaliation by the facility against the resident. For example, in a recent survey by the Atlanta ombudsman program, 44 percent of the residents who had seen abuse of other residents did not report it. Half (50 percent) did not tell because they feared retaliation (Atlanta Long-Term Care Ombudsman Program, 2000). Other residents and family members did not file formal complaints because they felt the process was futile. For example, in the study by the Atlanta ombudsmen, 38 percent of the residents said reporting “wouldn't do any good” (Atlanta Long-Term Care Ombudsman Program, 2000). Finally, some families reported that they did not file formal complaints in some cases because all their energy was directed at getting adequate medical care for their loved one who had been abused, moving them to the hospital, and then finding a new nursing home for the resident following acute care discharge (Bowers et al., 2001).

Underreporting by Ombudsmen

There is also some underreporting of complaints by ombudsmen (Administration on Aging, 2000; Tatara, 1990). For example, some residents and family members do not consent to having a formal complaint filed. In addition, in a recent survey, one-third of the ombudsmen (36 percent) reported that they viewed their role as resolving complaints with the facility and filing a complaint only if unable to resolve the complaint. Another four percent reported that they would resolve problems between the resident or family and facility without ever filing a complaint (Hawes and Blevins, 2001).

Unreliable Reporting by the Nurse Aide Registries

There is considerable disagreement among the directors of the state nurse aide registries about whether there is overreporting or underreporting of complaints about abuse and neglect, as displayed in Figure 14-2. The situation is complicated by at least two factors. First, facilities are obligated by federal regulation to investigate and report incidents alleged to involve abuse, neglect, or misappropriation. Some respondents felt this encouraged some facilities to report even incidents that were not abuse or neglect just to ensure that they were in compliance with federal regulations. Other respondents felt that some facilities simply discharged CNAs involved in incidents or allowed them to resign, thus terminating any investigation or reporting process. Only 39 percent of the state nurse aide registry directors felt that facilities reported allegations of abuse or neglect “all of the time” (Hawes et al., 2001). Second, it was clear that differing concepts of the nature of abuse led some respondents to label reports of verbal or psychological abuse as overreporting, as illustrated by the following quote from on agency's director/program manager.

FIGURE 14-2

Agencies' views on the rate of allegations. SOURCE: Hawes et al. (2001).

Oh, there is just tremendous overreporting. You know, things like yelling at or threatening a resident. That's not really abuse, and we don't count it.

Aide Registry Director (Hawes et al., 2001)

There is also reason to believe that data from the nurse aide registries represent an underestimate based on the historically low rates at which these agencies substantiate allegations of abuse and neglect. As reported by the nurse aide registries, the substantiation rates for allegations of abuse and neglect ranged from a low of zero (i.e., no allegations substantiated) to a reported high of 98 percent, although the norm appeared to be a substantiation rate of about one-third for all allegations of abuse or neglect. Fewer than one in five of the state agencies (18 percent) had substantiation rates above 60 percent. About half of the state agencies (47 percent) reported substantiation rates of 20 to 39 percent, while slightly more than one-third of the agencies (35 percent) had rates between zero and 19 percent (Hawes et al., 2001).

There are several reasons for such low substantiation rates. First, in some states considerable time elapsed between the time the alleged incident occurred and the formal investigation by the state nurse aide registry. Second, if the only witnesses were the alleged perpetrator and the victim, most state registries closed the case, classifying it as either insufficient evidence or unsubstantiated. Many nurse aide registry respondents reported being uncomfortable with this decision to essentially drop cases that were based only on the word of a resident. They attributed this decision to the fact that the penalty for a CNA found to have committed abuse was being barred for life from nursing home employment. Thus, the states felt they were held to such a high burden of proof in these cases (e.g., beyond a reasonable doubt)—or would be held to such a standard if the case were appealed to an administrative law judge—that they would not accept cases they viewed as being essentially “he said/she said.” Third, if the facility were unable (or unwilling) to identify the alleged perpetrator of abuse, some states would close the case, classifying the injury as “an incident of unknown origin” and the case as unsubstantiated, as illustrated below in a case reported by the adult child of a resident.

The DON called me and said my mother had waked up with a bump, a red bump, on her forehead. When I got to the facility that morning, I found her horribly bruised on her face and [the backs of her] forearms, as you can see in the photograph. She looked as if someone had gone seven rounds with her, except she has advanced Parkinson's. The only movement she can make is to raise her arms like this [indicating she could raise them defensively in front of her face]. The facility said she must have gotten them [the bruises and contusions] falling against her bedrails, but she can't move independently in bed. … So then they said they didn't know how it happened. When I called the state's toll-free number [for the abuse hotline], I was told they couldn't do anything if the facility couldn't identify the perpetrator. … Did anyone suggest I call the police? No, no one.

Daughter of a resident, speaking in a focus group with other family members (Hawes et al., 2001)

Finally, there is some evidence to suggest that if the nursing home terminated the employment of the alleged perpetrator or if the CNA in question quit after an alleged incident, the case was closed. However, it appears that some such cases never appear as substantiated nor is the CNA in question ever listed on the registry as barred from nursing home employment (Hawes et al., 2001).

As a result of these factors, the actual number of abuse and neglect cases reported by the nurse aide registries as substantiated is quite small relative to the number of allegations received. In focus group interviews, the directors of the state survey agencies that had overall administrative authority for the nurse aide registries expressed concern about the relatively low rates of substantiation, particularly because most tended to believe that residents and families complained only when something significant had occurred.

Underreporting in the OSCAR Database

The surveys of the state nurse aide registries also suggest that the deficiency data on abuse in OSCAR represent an underestimate of the prevalence of abuse cases. Even when cases of abuse or neglect were substantiated, most states did not cite the facility for a sanction. Indeed, four-fifths of the states (63 percent) that could provide data on deficiency citations reported that they cited a deficiency in fewer than 10 percent of the substantiated cases (Hawes et al., 2001).

Sampling Facilities

For nursing homes, a sampling list exists at the national level from the OSCAR database listing all facilities that participate in Medicare or Medicaid. This covers nearly all licensed nursing homes (i.e., more than 95 percent) (Strahan, 1997).

For residential care facilities, there is no national list of facilities. Indeed, securing a list will be a challenging task. First, the list must be constructed at the state level. Second, there are multiple licensing agencies in many states. Thus, a decision must be made about what types of facilities to include and what types to exclude. In general, there are two types of residential care facilities. One group includes facilities specifically licensed for special populations, such as for persons with substance abuse, mental illness, or developmental disabilities. They represent a small proportion of all residential care facilities (e.g., about 7,000 of more than 40,000 facilities) and an even smaller proportion of beds (Clark et al., 1994; Hawes et al., 1995a). Moreover, they tend to receive special funding for programmatic services and to have higher staffing levels than traditional residential care facilities. A second group of facilities, the most common, is licensed for general populations and includes frail elderly and persons with psychiatric conditions. These facilities are generally licensed by state health departments, departments of aging, and departments of community services. In some states, there is a separate licensure category for very small homes (e.g., two to six beds). Moreover, as noted, in a few states, even for the general, mixed population facilities, there are multiple licensing agencies, or some that license while others offer registration (e.g., for Medicaid waiver programs) or certification. Thus, securing a comprehensive, unduplicated list is a challenge.

Another critical sampling issue is whether to oversample among larger facilities. An estimated two-thirds of all residential care facilities have 2 to 10 beds. However, an estimated two-thirds or more of all residents are found in larger facilities (e.g., 11 beds or more).

Sampling Residents

Decisions about sampling residents are intertwined with decisions about data collection, and they too are challenging. As noted above, research suggests that residents at highest risk for abuse and neglect are those with cognitive impairment and behavioral symptoms. Research is more mixed about whether greater levels of impairment in ADLs represent a risk factor. In nursing homes, the majority of residents receive assistance in three or more ADLs, so a random sample would produce adequate numbers of residents with significant physical impairment. Most residents also have moderate to severe cognitive impairment. Many (though not necessarily all) of those will not be candidates for interviews. So, one key issue is how one can collect valid information about the experience of these residents. However, it will not be difficult in even a random sample to secure an adequate number of residents with this risk factor.

Other potential risk factors for abuse or neglect are less common among nursing home residents. For example, the most recent data suggest that fewer than 10 percent of residents are African American and only 9 percent exhibit physically aggressive behaviors. Similarly, if one wished to have results that were generalizable to short-stay residents, one would need to oversample such residents.

Fortunately, there are two sources of data that can inform sampling decisions in nursing homes. The Medical Expenditure Panel Survey (MEPS) Institutional Component provides estimates of the prevalence of various conditions and risk factors among a national probability sample of residents (Krauss and Altman, 1998). Even more immediate data are available through the national database CMS maintains on all nursing home residents in every nursing home certified to participate in the Medicare or Medicaid programs. These data, taken from the Minimum Data Set (MDS), provide information on hundreds of characteristics for the universe of residents.

In residential care facilities, there is less current information available with which to make sampling decisions about residents. The most recent multistate study of residential care facilities is the 10-state study conducted for the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation (Hawes et al., 1995a,b). These data are from interviews conducted during 1993, and the states were selected on the basis of their regulatory environment. Within those states, facilities were selected on a random, stratified basis (i.e., size and licensure status), and residents were randomly selected, as were staff members. However, the estimates these data produce are somewhat dated, particularly because there is some expectation that acuity levels have been increasing in RCFs in most states. A more recent ASPE study has produced data on a national probability sample of assisted living facilities, residents, and staff (Hawes et al., 1999, 2000). Rough estimates of resident acuity levels in physical functioning (i.e., ADL) and cognitive status are available for all facilities (Hawes et al., 1999), while more detailed data (e.g., behaviors, falls) are available for residents in assisted living facilities that offer either high services or high privacy (Hawes et al., 2000).

Sampling decisions in residential care are complicated by the fact that there appears to be significant variation across states. Some, like North Carolina, have made aggressive use of RCFs to limit use of nursing homes. In these states, the resident mix is considerably more impaired physically and cognitively than in other states that have not pursued an aggressive expansion in the number of RCFs and in the level of care that may be provided in those facilities. In addition, there appear to be important differences in resident characteristics among different types of residential care facilities. For example, small homes are more likely to have residents with primary psychiatric diagnoses. Similarly, the assisted living sector of residential care is largely populated by persons who have higher incomes and are more racially homogeneous than residents in traditional RCFs. If these factors are expected to have an effect on the prevalence of abuse or neglect, this must be considered in designing the sampling plan of any study aimed at examining prevalence.

Sampling Staff

There does not appear to be sufficient information about staff risk factors from prior studies that would facilitate decisions about whether to oversample certain types of staff. For example, one study suggests that the belief that nursing home residents are childlike makes a staff member somewhat more likely to abuse residents, but there is no obvious way to initially select a sample based on this characteristic. However, the MEPS study provides general demographic data on nursing home staff, and the two ASPE studies also provide such data on staff demographics, training and education, and other characteristics.

My strong recommendation would be to depart from prior studies that interviewed only staff working during the shifts that field interviewers were on site. In practice, when in-person interviews have been used to collect data, this has meant that staff members who work during the morning and evening shifts during the week were overrepresented in staff samples. Night shifts and weekends, however, have a tendency to be short-staffed and to have the fewest supervisors available. Thus, staff working on these shifts may be in situations when abuse and neglect are more likely to occur.

Other decisions involve the type of staff to be studied. Although CNAs provide more than 80 percent of hands-on care, other staff members—from nurses to maintenance staff—are potential perpetrators as well as sources of information about the prevalence and nature of abuse and neglect.

Data Collection Issues

Data collection issues are extremely complex. Interviews with staff members could be conducted by telephone or in person, with some research suggesting that respondents are more willing to self-report illegal or questionable behavior when they are not being interviewed in person. In addition, this would facilitate interviewing staff who work night and weekend shifts.

Interviews with residents are more problematic on several fronts. Most experts agree that in-person interviews are most likely to produce valid and complete information about such sensitive information as their experiences in nursing homes or RCFs. In interviews with residents about whether they had ever had complaints about the care they received and how they handled it, Barbara Bowers and I had great difficulty getting residents to discuss this difficult topic. The Atlanta Ombudsman program, however, had substantial success in its resident interviews, and it is probably worth speaking with Karen Boyles, the Ombudsman Coordinator, about the methods they used.¹⁸

There is somewhat less agreement about what proportion of residents can be interviewed. Many researchers use a set cutoff point on a scale that measures cognitive function (e.g., Simmons and Schnelle, 2001). Others argue for less reliance on set cut-points, opting to base decisions on initial attempts to interview residents who are able to communicate and have some remaining skills for daily decision making (e.g., Gwen Uman, personal communication, 1999; Morris, personal communication, 2000). Moreover, researchers may wish to apply techniques used in the field of research on persons with developmental disabilities to improve their ability to secure information directly from residents with cognitive impairment.

Whatever the decision about how many residents can be interviewed and how to interview them more effectively, the fact remains that many residents who are presumably at highest risk for abuse and neglect will not be good subjects for interviews. There are at least four basic options for proxy respondents for residents unable to respond verbally:

• Use family members who regularly visit the cognitively impaired resident as a proxy respondent. They can be interviewed in person or by telephone. However, some studies suggest that family members report levels of satisfaction with care higher than expressed by residents.
• Use family members who are regularly present in the facility at different times of the day. They may be good observers and reporters about life in the facility or a good supplement to the reports of cognitively intact residents.
• Use cognitively intact residents as proxies. They may know more about the day-to-day life of residents in the facility than family members, who visit only at certain times of the day or week. On the other hand, in facilities with special care units for persons with dementia or even those that locate residents on different units by the type and level of acuity of the resident, intact residents may not be in a position to observe directly the care of residents who cannot respond for themselves.
• Use multiple sources of information for residents who are unable to respond for themselves, including medical records, interviews with family members, interviews with roommates who are cognitively intact, observation of the resident, and interviews with direct care staff. This technique demands highly trained and well-educated interviewers (e.g., RNs) but has been effective in producing reliable information about residents' health and functional status, activities, mood, and preferences (Hawes et al., 1995d).

Another challenging data collection issue is related to protection of human subjects. Staff may be asked to report behavior by themselves or others that is illegal, so confidentiality protections will be crucial. For residents the issue is more complex. Residents and family members fear retaliation if they complain about the care they receive. This is a particularly problematic issue with respect to interviewing residents, because it is difficult to find a place in which they can be interviewed in privacy, completely outside the hearing of others. Most residents in nursing homes and RCFs (except assisted living facilities) have a roommate. In addition, CNAs, housekeeping staff, laundry staff, and maintenance staff may be in and out of a resident's room as a normal course of business. Data collection efforts must take this into account.

It will also be difficult to provide reasonable information about the nature of the study to the facility administrators while still protecting residents. It will be important to stress that the data collection is not aimed at producing any report on individual facilities but rather at producing national estimates. In addition, it will be important to ensure that residents who are selected for interviews are not placed at heightened risk for retaliation.

Furthermore, any data collection efforts must consider what the responsibility is of the field interviewers in terms of mandatory abuse reporting laws. Most state laws require reporting only if the individual witnesses abuse, but some may be broader. In any event, some interviewers will be told about incidents that involve illegal behavior—from rape to assault. Such incidents will represent ethical, legal, and moral challenges for the field interviewers and for the data collection firm.

Finally, the National Institute on Aging (NIA) and other potential funding agencies should work closely with the IRB(s) of any grantees who are selected to study abuse and neglect in nursing homes. In their attempts to protect subjects, some IRBs place such severe restrictions on researchers that meaningful and important research cannot be accomplished.

Staff Shortages

As shown in Table 14-7, the directors and managers of the nurse aide registries felt strongly that issues related to nursing home staffing levels, training, and turnover were major factors causing or contributing to abuse and neglect. Indeed, nearly all the responses, including the role of low wages, emphasized the role of staffing shortages and poor staff to resident ratios as major causes of abuse and neglect in nursing homes (Hawes et al., 2001). This was consistent with prior studies. A recent study (U.S. Department of Health and Human Services, Health Care Financing Administration, 2000) found major staffing shortages in many nursing homes. Similarly, hearings before the U.S. Senate Special Committee on Aging (1998) and reports by the U.S. General Accounting Office and the U.S. Office of the Inspector General for the U.S. Department of Health and Human Services identified staffing problems as major impediments to quality of care in nursing homes. For example, in 10 states surveyed by the Office of the Inspector General (U.S. Department of Health and Human Services, Office of the Inspector General, 1999a), survey and certification staff, state and local ombudsmen, and directors of state units on aging identified inadequate staffing levels as one of the major problems in nursing homes. The OIG report concluded that the type of deficiencies commonly cited “suggest that nursing home staffing levels are inadequate” (U.S. Department of Health and Human Services, Office of the Inspector General, 1999a). Too few staff, low staff-to-patient ratios, and overworked employees result in increased stress levels, and in focus group interviews, CNAs identified short-staffing as the major cause of abuse and neglect (Hawes et al., 2001).

TABLE 14-7

Nurse Aide Registry Agency Views on Main Causes of Abuse and Neglect.

Staff Training and Aggressive Residents

Staff in many of the state aide registry agencies believed that inadequate training for CNAs was a major factor causing or contributing to abuse and neglect. In part, they suggested, some CNAs might lack an understanding of what constituted abuse. In addition, they argued that cultural factors might play a role. For example, in some families slapping is not considered abusive but an appropriate response to certain behaviors. A prior study that surveyed nursing home staff who acknowledged abusing a resident found that such CNAs were more likely to view the elderly “as children” (Pillemer and Moore, 1989).

There is this aphasic man from stroke. He's a messy eater but likes to feed himself. He can be aggressive if I try to wipe his mouth. One day, he grabbed me, tried to bite me. If I grab him and sit him down, or even shove him into his chair to keep him from biting me [that] is not abuse. … Or some resident will come up behind you and pinch your bottom. I mean, if our spouses treated us like this, they'd be in jail … for domestic abuse. This man [the resident who had a stroke and tried to bite her] is cognitively alert. He knows what he is doing; I know he does, because all the time he was grabbing my hand and trying to bite me, he was grinning. And I don't want my fingers in his mouth. I've seen what he puts in there. He puts BM [fecal matter] in his mouth and eats it. If I'm rough with him, I'm just protecting myself from injury.

CNA (Hawes et al., 2001)

Several nurse side registry directors felt that many staff had difficulty in handling residents with behavioral symptoms, particularly combative or aggressive behaviors. Focus group interviews with CNAs demonstrated that, in fact, many CNAs believed that combative behaviors, even among residents with psychiatric illnesses or Alzheimer's disease, were purposive and that some “rough handling” by staff in response or to protect themselves was justified and not abusive (Hawes et al., 2001).

It's OK to be a little rough with a resident if it's defense from attack by a resident. But you know, if the nurse sees fingerprints [bruises] on the resident, she will charge you with abuse. CNA #3

We hear, if they have Alzheimer's, they don't know what they're doing. But I mean it, if our husbands hit us like some residents do, he would be in jail. CNA #12

If someone hits you on the head, surprises you, it's sort of a body mechanism. You raise your arm. You might hit, but it's reflex, not intentional. CNA #3

I had a co-worker [who] had gotten a hepatitis B shot, and it was sore. A resident hit her. Her [the CNA's] arm went up [she demonstrates raising her arm in a threatening way, as if to hit someone]. Automatic reflex. She lost her job. CNA #7

Somebody sneaks up and hits you or pinches. You jump; you might hit someone. It's automatic. CNA #12

That's not abusive. I agree. [That] resident should be brought up on disciplinary procedures. CNA #11

(Hawes et al., 2001)

Indeed, one troubling finding from the CNA focus groups was that there was disagreement among the CNAs about behaviors that were a reaction to something a resident did. In particular, some of the CNAs felt that rough handling of a resident who was physically aggressive with them was justified and not abusive, especially if they perceived the behavior as intentional. Some felt those reflexive actions—or what they termed a startle response—were acceptable. In part, these CNAs felt they had a right to defend and protect themselves from injury. In part, they believed the residents' aggressive behaviors were intentional, that is, that the resident was aware of what he or she was doing. This belief often persisted even when the examples given by the CNAs indicated that the residents had some level of cognitive impairment.

I have a somewhat different opinion on the reflex issue [of hitting back if startled by a resident]. You might get startled, but you know where you are. You're in a nursing home. I tell my staff, who is the resident? The residents, they are who we're here to care for. CNA #9

But you know, it's from physical reaction, not a thought process. CNA #3

Well, you can't let your physical reaction [control]. CNA #8

I agree with … [CNA #9]. I think the startle reaction is a result of being overly stressed and overworked. I worked on a [Alzheimer's] Special Care Unit, and I was having a really rough day. It was near the end of my shift, and we had been short-staffed all day. And this one resident who was really confused all the time just kept asking me the same question, over and over and over. She wouldn't let me finish changing her, because she kept going on at me. I was so frustrated. And I just took her by the shoulders and kind of shouted [at her] “Why are you doing this?” And she looked at me, and with perfect clarity, said, “I don't know.” And then … [she] cried. She cried, and I cried. CNA #8

You never ever had a startle reflex? CNA #12

Not on the job. You remember where you are; remember they are the residents. If you can't control that startle thing without raising your hand to a resident, you shouldn't work in a nursing home. CNA #9

(Hawes et al., 2001)

In the focus groups, other CNAs argued that they had a right to protect themselves from injury but spoke of multiple ways of achieving that without resorting to rough handling of a resident. For example, two staff members noted that their facility had a behavior committee that was specially trained to deal with residents who engaged in challenging or physically aggressive behaviors. This team could be called on if a CNA was having difficulty. Other CNAs said that the policy in their facility was to have a team of CNAs work with a physically difficult or aggressive resident, for protection of both the resident and staff.

In addition, there was disagreement about whether staff members were justified in reflexive hitting, shoving, or yelling at a resident. Some CNAs noted that these reactions and actions were more likely to occur when staff members were tired and overworked, conditions more likely to arise when the facility was short-staffed.

Finally, it is worth noting that some research suggests that some attitudes and experiences intrinsic to the staff member may play a role. Such characteristics included staff having the view that residents were children who needed discipline, staff who reported high levels of arguments or conflict with residents, and those who reported having stressful personal lives (Pillemer and Hudson, 1993; Pillemer and Moore, 1989).

Are There Ways to Improve Detection?

• Autopsies might reveal more about prevalence if more deaths in nursing homes and RCFs were examined (Collins et al., 2000).
• Most nurses in two studies reported that the topic of elder abuse and reporting requirements were not part of their nursing education (Pettee, 1997). It would be useful to determine whether curricula in schools of nursing and continuing education programs include information on how to recognize abuse and the responsibility of nurses to report suspected cases of abuse, as recommended by Pettee (1997) and Weiler and Buckwalter (1992). The same is true about neglect. It would be even more useful to determine the effectiveness of different approaches to informing licensed nurses of their responsibilities.
• Do any EDs have protocols in place for identifying suspected cases of abuse and neglect among residents of nursing homes and residential care facilities, for documenting adequately to differentiate between accidental trauma and abuse or neglect, and for reporting such cases to appropriate authorities? Are these protocols followed? Are there any differences in prevalence of reports and substantiated cases among EDs that have such protocols and those that do not?
• What has been the role of medical directors in facilities and resident physicians in detecting, reporting, and preventing abuse and neglect? What might increase their ability to recognize abuse and neglect and their willingness to report it when it occurs? What role can physician licensing boards play?
• What is the effect of ombudsman programs? Prior studies suggested that the existence of the ombudsman program and presence of ombudsmen visiting nursing homes on a regular basis did not influence abuse reporting or even resulted in fewer survey deficiencies (Cherry, 1991; Litwin and Monk, 1987). However, a more recent study analyzed the program after legislation that enhanced its authority and found that the presence of ombudsmen was associated with increased abuse reporting, higher substantiation rates, higher rates of survey deficiencies, and increased use by state survey agencies of enforcement sanctions (Nelson et al., 1995). In addition to conflicting study findings, a current study surveyed state ombudsmen and found differing views among them of their role in addressing complaints about abuse from residents and families (Hawes and Blevins, 2001). This study found many ombudsmen did not routinely file large numbers of complaints with the state survey agencies (e.g., 38 percent of the ombudsmen reported filing fewer than 10 complaints during the preceding year, while 17 percent filed more than 100 complaints in the past 12 months). In addition, they had differing views of the proper role of ombudsmen. Only 24 percent of the ombudsmen reported that they made follow-up calls to the state survey agency when a complaint of abuse or neglect had been filed. Similarly, about one-third of the ombudsmen (36 percent) reported that they filed a complaint only if they were unable to resolve the individual case (Hawes and Blevins, 2001).

These diverse findings suggest the need for:

• Studies that identify different models of ombudsman programs and examine their effect on the prevalence of reports, substantiation rates, deficiency citations, and the use of enforcement sanctions.
• An examination of the effect of various ombudsman interventions on the prevalence and nature of abuse, including an analysis of the conditions under which such interventions will be adopted, fully implemented, and maintained over time in various types of facilities. Examples include programs developed by CARIE (1991) (advocates in Philadelphia), the Atlanta Long-Term Care Ombudsman program, and the North Shore Legal Services Program.
• An examination of the effects of different types of training for nursing facility and RCF staff, resident and family education and empowerment interventions provided by ombudsmen programs (effects on both detection and reporting as well as on prevention).

Causes

• What is the relationship between abuse of residents and the work conditions experienced by direct care staff (e.g., management style, staff satisfaction with working conditions and management support, staff satisfaction with wages and benefits)?
• What is the relationship between aggressive or difficult behaviors by residents and abusive behaviors by staff and whether aggressive staff responses are moderated by staff training, staffing levels, or specific interventions (e.g., use of behavior management teams for residents with challenging behaviors)?
• What staff characteristics are associated with a greater propensity for abuse or neglect, including such factors as gender, reason for choosing work in residential long-term care, attitudes about the elderly, and others?
• What are risk factors for individual staff members—both situational, having to do with their work environment, and intrinsic?

Prevention

• Evaluate different facility management styles (e.g., administrator, director of nursing, unit charge nurses) associated with variations in rates and types of abuse and neglect. In particular, one might follow up on Vince Mor's “good nursing home study” (Mor et al., 1986) and Bowers and Becker's work (1992) to determine whether certain management styles are associated with less abuse and neglect.
• Examine the effect of environmental factors (e.g., that make work in nursing homes more or less difficult or burdensome for staff) and more or less confusing (or in the case of bathrooms, unfamiliar and disturbing) for residents with cognitive impairment.
• Identify and evaluate any model employee screening and hiring practices.
• Evaluate the effects of different staffing models, particularly use of permanent staff assignment to a group of residents (e.g., the primary care model versus the floating CNA model).
• Evaluate the effect of different staffing patterns, particularly in terms of staff-to-resident ratios, on the prevalence and severity of abuse and neglect.
• Identify and evaluate interventions aimed at CNAs that are intended to improve quality or explicitly to prevent abuse. The one most highly regarded by ombudsmen is a training program developed by an advocacy group, the Coalition of Advocates for the Rights of the Infirm Elderly (CARIE), and researcher Karl Pillemer. This program has been evaluated and found to be effective in changing both staff attitudes and behaviors (Pillemer and Hudson, 1993). It would be useful to examine the extent to which the effects persist and whether effects vary across different facility types (e.g., different management styles, different staffing patterns and staffing levels). Another training program worth evaluation might be the one developed by North Shore Legal Services Program (MacDonald, 2000); however, they found difficulties in maintaining and expanding the intervention in facilities.
• Evaluate staff empowerment models, such as Wellspring. Such research should include an analysis of the conditions under which such interventions will be adopted, fully implemented, and maintained over time in various types of facilities.
• Evaluate models of culture change, such as the Eden Alternative, to determine whether they reduce the prevalence or severity of abuse and neglect. Such research should include an analysis of the conditions under which such interventions will be adopted, fully implemented, and maintained over time in various types of facilities.
• Evaluate the effect of different regulatory systems. For example, Washington state has been identified as having a model program for quality assurance and for detection and prevention of abuse and neglect, and ombudsmen, facility administrators, and state agency nurse aide registry staff report that incidents of physical abuse are much less common than the rates reported in other states (Hawes et al., 2001; Hawes, based on site visit interviews in 2001).