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14 Elder Abuse in Residential Long-Term Care Settings: What Is Known and What Information Is Needed? Catherine Hawes* There has been very limited research on elder abuse, although there is some evidence that suggests it may be nearly as widespread in the community as child abuse (Bourland, 1990; Fulmer, 1989; Kleinschmidt et al., 1997; National Center on Elder Abuse, 1998; Pillemer and Finkelhor, 1988; U.S. House of Representatives, 1990). Al- though attention has increased somewhat in recent years, most research on elder abuse and neglect has focused on incidence, causes, and risk factors in the community. Elderly who live in settings other than their own homes or apartments or those of relatives have received relatively little attention from either the research or policy communities. However, elderly who live in residential settings that offer long-term supportive services are at particular risk for abuse and neglect.1 They are particularly vulnerable because most suffer from several chronic diseases that lead to limitations in physical and cognitive functioning and are dependent on others (Spector et al., 2001). In addition, many are either unable to report abuse or neglect or fearful that *Catherine Hawes, Ph.D., is a professor in the Department of Health Policy and Manage- ment, School of Rural Public Health, at Texas A&M University System Health Science Cen- ter. 1Marshall and his colleagues assert that elder abuse is more common in homes than in institutional or residential facility settings but offer no evidence to support this assertion (Marshall et al., 2000). What they ignore is that although there may be more cases of community-dwelling elderly, proportionally, there may be more cases in residential/institu- tional long-term care settings. 446
RESIDENTIAL LONG-TERM CARE SETTINGS 447 such reporting may lead to retaliation or otherwise negatively affect their lives (Hayley et al., 1996). Thus, as Shapira (2000) noted, âThe elderly in skilled nursing facilities are among the most vulnerable members of our society. They are dependent on the . . . nursing facility operator for their food, medicine, medical care, dental care, and a bed; a roof over their heads; for assistance with virtually every daily activity.â On any given day, approximately 1.6 million people live in approxi- mately 17,000 licensed nursing homes, and another estimated 900,000 to 1 million live in an estimated 45,000 residential care facilities, variously known as personal care homes, adult congregate living facilities, domicili- ary care homes, adult care homes, homes for the aged, and assisted living facilities (Strahan, 1997; Hawes, et al., 1999, 1995a). Research suggests that the 2.5 million vulnerable individuals in these settings are at much higher risk for abuse and neglect than older persons who live at home, as discussed below. Moreover, these figures may underestimate the number of persons who are actually at risk for abuse or neglect in a nursing home. Based on data from the National Mortality Followback Survey, researchers estimate that more than two-fifths (43 percent) of all persons who turned 65 in 1990 or later will enter a nursing home at some time before they die (Kemper and Murtaugh, 1991; Murtaugh et al., 1990). Moreover, of those who enter a nursing home, more than half (55 percent) will have a total lifetime use of at least one year. The probability of use increases dramati- cally with age, rising from 17 percent for those aged 65 to 74 to 60 percent for persons aged 85 to 94. Because women live longer than men, their relative risk of lifetime use of a nursing home is higher (i.e., 52 percent versus 33 percent). In addition, because the most rapidly growing segment of the population is those aged 85 and older, the proportion of persons estimated at risk for nursing home use at some time in their lives is expected to increase over time. Thus, while only 2.5 million elders living in a residential long-term care facility on any given day may be at risk for abuse, over their lives many elderly may be at risk during a period of long-term care facility use. The general goals of this paper are to present the available evidence about the nature and scope of abuse and neglect in nursing homes and other residential care facilities and the causes, as well as to suggest a research agenda. To accomplish these goals, the paper is organized as follows: â¢ Section 2 presents definitions of abuse and neglect; â¢ Section 3 provides the available evidence about the nature and scope of abuse and neglect in nursing homes; â¢ Section 4 presents the available evidence about the nature and scope of abuse and neglect in residential care facilities; â¢ Section 5 explains the limitations of these estimates;
448 ELDER MISTREATMENT â¢ Section 6 discusses the sample design and data collection issues associated with studies to determine the prevalence of abuse and neglect in nursing homes and residential care facilities; â¢ Section 7 discusses what is known about the causes of abuse and neglect and presents the authorâs recommendations for additional research. DEFINITIONS OF ABUSE AND NEGLECT The definition of physical abuse is the area about which there is the greatest agreement, both in terms of being âwrongâ and in terms of what constitutes physical abuse; it involves injury or harm to a person carried out with the intention of causing suffering, pain, or impairment (Clarke and Pierson, 1999; Lachs et al., 1994; Lachs and Pillemer, 1995; Tatara and Kuzmeskus, 1996â1997). The Administration on Aging, in its instructions to long-term care ombudsmen, defines abuse as âthe willful infliction of injury, unreasonable confinement, intimidation or cruel punishment with resulting physical harm, pain, or mental anguish or deprivation by a per- son, including a caregiver, of goods or services that are necessary to avoid physical harm, mental anguish, or mental illnessâ (1998:13). This is consis- tent with the definition used by the Centers for Medicare and Medicaid Services (CMS, formerly the Health Care Financing Administration) in its guidelines to the states on reporting of abuse and neglect in nursing homes, as reported below. Physical abuse is generally thought to include hitting, slapping, push- ing, or striking with objects. In nursing homes, other types of actions have been included, such as improper use of physical or chemical restraints. Physical abuse also typically includes sexual abuse or nonconsensual sexual involvement of any kind, from rape to unwanted touching or indecent exposure.2 There is somewhat less agreement about whether verbal or psychoso- cial abuse should be included in the general category of abuse when applied to older persons. This is generally thought of as âintentional infliction of anguish, pain, or distress through verbal or nonverbal actsâ and includes threats, harassment, and attempts to humiliate or intimidate the older per- son (Clarke and Pierson, 1999:632). In focus group interviews conducted in 2000 (Hawes et al., 2001), 2Clarke and Pierson (1999:635) argue that examples (or possibly indicators of potential abuse and neglect) of abuse are âfalls and fracture, physical or chemical restraints, malnutri- tion, dehydration, bed sores, defective equipment, lack of supervision, weight gain or loss, theft of money and personal property, unexpected or wrongful death, unsanitary conditions, untrained or insufficient staff, over-sedation, substandard medical care, and poor personal hygiene.â
RESIDENTIAL LONG-TERM CARE SETTINGS 449 certified nursing assistants (CNAs) defined abusive actions that included both physical and verbal or psychological abuse, such as: â¢ aggressiveness with a resident; â¢ rough handling; â¢ pulling too hard on a resident; â¢ yelling in anger; â¢ threats; â¢ punching, slapping, kicking, hitting; and â¢ speaking in a harsh tone, cursing at a resident, or saying harsh or mean things to a resident. Neglect of older persons is another area that has received increased attention in recent years. As Clarke and Pierson noted, âDefinitions of neglect are probably the most disputed of any categoryâ of maltreatment of elderly persons (Clarke and Pierson, 1999:632). However, in general, ne- glect is thought of as including âthe refusal or failure of a caregiver to fulfill his or her obligations or duties to an older person, including . . . providing any food, clothing, medicine, shelter, supervision, and medical care and services that a prudent person would deem essential for the well-being of anotherâ (Clarke and Pierson, 1999). CNAs who participated in focus groups also had very clear and specific ideas about what constituted neglect in nursing homes (Hawes et al., 2001). They mentioned a number of examples: â¢ no oral/dental care; â¢ not doing range of motion exercises; â¢ not changing residents each time they are wet after an episode of incontinence; â¢ ignoring residents who are bedfast, particularly not offering activi- ties to them; â¢ not doing prescribed wound care; â¢ not giving residents regular baths; â¢ doing a one-person transfer when the resident requires a two-per- son transfer; â¢ not providing cuing or task segmentation to residents who need that kind of assistance to maximize their independence; â¢ not doing scheduled toileting or helping residents when they ask; â¢ not keeping residents hydrated; and â¢ turning off a call light and taking no action on the residentâs re- quest. The federal government also has formal definitions of abuse and ne-
450 ELDER MISTREATMENT glect in nursing homes. The nursing home reforms contained in the Omni- bus Budget Reconciliation Act of 1987 (OBRA 1987. Pub L. No. 100-203) specified that nursing home residents had the âright to be free from verbal, sexual, physical, and mental abuse, corporal punishment, and involuntary seclusionâ (42 CFR Ch. IV (10-1-98 Edition) Â§483.13 (b)). HCFA issued regulations and guidelines implementing these provisions of the OBRA 1987 legislation. These regulations specified the following definitions: Abuse means the willful infliction of injury, unreasonable confine- ments, intimidation, or punishment with resulting physical harm, pain, or mental anguish. Neglect means failure to provide goods and services necessary to avoid physical harm, mental anguish, or mental illness. The federal regulations implementing OBRA 1987 also specified long- term care facilitiesâ responsibility to âdevelop and implement written poli- cies and procedures that prohibit mistreatment, neglect, and abuse of resi- dents and misappropriation of resident propertyâ (42 CFR Ch. IV (10-1-98 Edition) Â§483.13 (c)). Furthermore, the law required that the facility âmust not employ individuals who have been found guilty of abusing, neglecting, or mistreating residents by a court of law or have had a finding entered into the state nurse aide registry concerning abuse, neglect, mistreatment of residents, or misappropriation of their propertyâ (42 CFR Ch. IV (10-1-98 Edition) Â§483.13 (c)(1) (ii) (A) (B)).3 EVIDENCE ABOUT THE NATURE AND PREVALENCE OF ABUSE AND NEGLECT IN NURSING HOMES For decades, nursing homes have been plagued with reports suggesting widespread and serious maltreatment of residents, including abuse, neglect, and theft of personal property (Douglass et al., 1980; Fontana, 1978; Insti- tute of Medicine, 1986; Mendelson, 1974; Moss and Halamandaris, 1977; New York State Moreland Act Commission, 1975, 1976; Ohio General Assembly Nursing Home Commission, 1978; Stannard, 1973; U.S. Senate, 1970; U.S. Senate, 1971; U.S. Senate Special Committee on Aging, 1974â 1975; Vladeck, 1980). In addition, a number of case studies, participant- observation studies, interviews with nursing home staff, and interviews with residents and ombudsmen provided evidence of abuse (Doty and 3This lifetime ban was modified in certain cases under provisions of the 1997 Balanced Budged Act. Balanced Budget Act of 1997, Conference Report to Accompany H.R. 2015. 105th Congress, 1st Session. House of Representatives, Report 105-217 (July 30, 1997).
RESIDENTIAL LONG-TERM CARE SETTINGS 451 Sullivan, 1983; Douglass et al., 1980; Fontana, 1978; Gubrium, 1975; Jacobs, 1969; Kayser-Jones, 1990; Monk et al., 1984; Stannard, 1973; U.S. House of Representatives, Select Committee on Aging, 1990). Such condi- tions were major factors in the passage of the nursing home reforms con- tained in the Omnibus Budget Reconciliation Act (OBRA) of 1987 (OBRA, 1987).4 The OBRA 1987 reforms, the most sweeping set of legislative changes to the way nursing homes were regulated since the passage of Medicaid and Medicare, addressed multiple areas of resident care and qual- ity of life. They also specified that residents had the right to be free from verbal, sexual, physical, and mental abuse, including corporal punishment and involuntary seclusion, and limited the use of physical restraints and inappropriate use of psychotropic medications (Hawes, 1990; Elon and Pawlson, 1992). Despite this federal law and reports over the preceding decades that raised the possibility of widespread and serious abuse, there has never been a systematic study of the prevalence of abuse in nursing homes. Indeed, it is important to note that none of the studies discussed below involving interviews with residents or with facility staff were designed with the inten- tion of producing generalizable estimates to the nation as a whole. Never- theless, the disparate evidence that is available and discussed below sug- gests the existence of a serious problem that warrants further study. Resident Risk Factors Several studies have examined the characteristics of individuals living in community settings (e.g., their own home or that of others) in an attempt to identify factors that place an older person at greater risk for being abused or neglected. Such studies found that persons suffering abuse or neglect were more likely to be old and nonwhite and to have greater limitations in physical and cognitive functioning, although there has been some disagree- ment about whether functional impairment in the activities of daily living (ADL) is a risk factor for abuse (Bristowe and Collins, 1989; Johnson, 1991; Lachs et al., 1994; Lachs et al., 1996, 1997; Pillemer and Finkelhor, 1988; Podnieks, 1992). However, there is strong evidence that the presence of cognitive impairment or dementia is associated with higher risk for being abused (Coyne et al., 1993; Dyer et al., 2000; Homer and Gilleard, 1990; OâMalley et al., 1983; Paveza et al., 1992; Pillemer and Finkelhor, 1988; Pillemer and Suitor, 1992; Wolf and Pillemer, 1989). Studies of individual risk factors for elderly living in residential long- term care facilities are more limited but generally suggest the existence of 4The Omnibus Budget Reconciliation Act of 1987 ~ PL 100-203.
452 ELDER MISTREATMENT TABLE 14-1 Characteristics of Nursing Home Residents Characteristic Percent Aged â¥ 85 years 49 Nonwhite 9 Receives assistance with â¥3 ADLs 83 Mild to moderate cognitive impairment 71 Exhibits physically aggressive behaviors 9 Exhibits any behaviors (e.g., verbally or physically aggressive, resists nursing care, socially inappropriate) 30 SOURCE: Krauss and Altman (1998). similar risk factors for individual residents. For example, Burgess and her colleagues argued, âThe risk for abuse increases simply as a function of their dependence on staff for safety, protection, and careâ (Burgess et al., 2000). They found that a diagnosis of Alzheimerâs or other dementia or some type of memory loss or confusion was present at a somewhat higher rate among nursing home residents who had been sexually abused than among the average nursing home population, although those data were from a small case study (Burgess et al., 2000). Similarly, the findings from another study suggest that residents with behavioral symptoms, such as physical aggressiveness, appear to be at higher risk for abuse by staff (Pillemer and Bachman-Prehn, 1991), a finding supported by focus group interviews with CNAs (Hawes et al., 2001) and studies of precipitating factors among community-dwelling elders who have been abused (Pillemer and Suitor, 1992; Ehrlich, 1993). Unfortunately, dependence on others for help with physical functioning and impairment in cognitive functioning are common among the vast ma- jority of nursing home residents, and difficult or challenging behaviors are not uncommon, as displayed in Table 14-1. These behaviors are often a product of neurological changes, memory loss, and communication deficits associated with diseases such as Alzheimerâs. However, many staff mem- bers often view aggressive resident behaviors or attempts to resist care as intentional attempts by the resident to be difficult or to hurt staff, a belief
RESIDENTIAL LONG-TERM CARE SETTINGS 453 that makes such residents more likely to be handled roughly or abused by staff (Hawes et al., 2001). Reports of Abuse from Residents and Families I saw a nurse hit and yell at the lady across the hall because the nurse told the lady she didnât have all day to wait on her. The lady made some remark. The nurse hit the lady and said, âShut up.â Georgia Nursing Home Resident (Atlanta Long-Term Care Ombudsman Program, 2000) A few studies have interviewed residents and family members about their experiences in nursing homes and asked specific questions about abuse. The Atlanta Long Term Care (LTC) Ombudsman Program (Atlanta Long- Term Care Ombudsman Program, 2000) conducted the most recent study under a grant funded by the National Ombudsman Resource Center. In this study, ombudsmen interviewed 80 residents in 23 nursing homes in Georgia.5 This survey found that 44 percent of the residents reported that they had been abused, while 48 percent reported that they had been treated roughly. For example, one resident noted: They throw me like a sack of feed . . . [and] that leaves marks on my breast. Georgia Nursing Home Resident (Atlanta Long-Term Care Ombudsman Program, 2000) In addition, 38 percent of the residents reported that they had seen other residents being abused, and 44 percent said they had seen other residents being treated roughly. For example, as one resident reported: My roommateâthey throw him in the bed. They handle him any kind of way. He canât take up for himself. Georgia Nursing Home Resident (Atlanta Long-Term Care Ombudsman Program, 2000) 5The ombudsmen initially identified what they considered 10 problem facilities and re- cruited residents from those nursing homes. The process was subsequently expanded to a total of 23 facilities, based on local ombudsman identification of residents willing to speak with the interviewers about issues of abuse and neglect. The authors reported, âAlmost all those approached agreed to be interviewed.â Those who declined cited fear of retaliation. Finally, the ombudsmen used CMS Survey protocols to identify âinterviewableâ residents in long-term care facilities (Atlanta Long-Term Care Ombudsman Program, 2000).
454 ELDER MISTREATMENT Focus groups and individual interviews with residents and family mem- bers for a study of the nursing home complaint-investigation process also produced reports of abuse and severe neglect. Families reported finding residents with bruises and abrasions, unexplained falls, some of which caused fractures, and residents left for days with broken bones before the family or residentâs physician were notified, such as the case reported be- low. Have I seen abuse? No, not directly. But Iâve come in and found my mom battered and bruised. I mean, her whole face was bruised and swollen, the backs of her hands and arms were bruised, as if she tried to protect herself. Daughter of a Texas Resident, 1999 (Hawes et al., 2000) Reports of Abuse from Facility Staff Oh, yeah. Iâve seen abuse. Things like rough handling, pinching, pulling too hard on a resident to make them do what you want. Slapping, that too. People get so tired, working mandatory overtime, short-staffed. Itâs not an excuse, but it makes it so hard for them to respond right. CNA from South Carolina (Hawes et al., 2000) A 1987 survey of 577 nursing home staff members from 31 facilities found that more than one-third (36 percent) had witnessed at least one incident of physical abuse during the preceding 12 months (Pillemer and Moore, 1989).6 As displayed in Table 14-2, such incidents included exces- sive use of physical restraints (21 percent); pushing, shoving, grabbing, or pinching a resident (17 percent); slapping or hitting (13 percent); throwing something at a resident (3 percent); kicking or hitting with a fist or object (2 percent). Ten percent of the staff members surveyed reported they had committed such acts themselves. A total of 81 percent of the staff reported that they had observed and 40 percent had committed at least one incident of psychological abuse during the same 12-month period. Psychological abuse included yelling in anger, insulting or swearing at a resident, inappropriate isolation, threaten- ing to hit or throw an object, or denying food or privileges. Yelling at a resident in anger and insulting or swearing at a resident were the most common acts observed, with 70 percent having observed yelling and 50 percent having observed a staff member insulting or swearing at a resident 6Thirty-one of a potential sample of 77 facilities in one state met the facility size criteria, agreed to participate in the study, and provided complete lists of staff.
RESIDENTIAL LONG-TERM CARE SETTINGS 455 TABLE 14-2 Results of Surveys of CNAs about Committing or Witnessing Abuse and Neglect of Residents Rates of Self-Reported Behaviorsa Pillemer and Pillemer and Moore Hudson Abusive Behaviors (percentage) (percentage) Yelled at a resident in anger 23 51 Insulted or swore at a resident 10 23 Threatened to hit or throw something at a resident 2 8 Pushed, grabbed, or shoved 3 17 Slapped or hit a resident 3 2 Thrown something at a resident 1 1 Excessive use of physical restraints 4 Not reported Rates of Behaviors Witnessed by CNAs Not Asked Yelling at a resident 70 Insulting or swearing at a resident 50 Excessive use of physical restraints 21 Pushing, grabbing, shoving, or pinching 17 Slapping or hitting a resident 13 Throwing something at a resident 3 Kicking or hitting a resident 2 aPillemer and Moore (1989) surveyed 577 staff (nurses and CNAs) about incidents over a 12-month period. Pillemer and Hudson (1993) interviewed 211 staff about incidents during the preceding 1-month period. (Pillemer and Moore, 1989). Interviews with more than 200 staff members who subsequently participated in an abuse-prevention training program also indicated substantial levels of abusive behaviors by staff caregivers in nursing homes. Focus groups with CNAs also provided quantitative and qualitative data that supported the findings reported by Pillemer and Moore. For example, North Shore Elder Services in Danvers, Massachusetts, conducted a recent project on reducing abuse and neglect in nursing homes (MacDonald, 2000). In this project, 77 CNAs from 31 nursing facilities received training. As part of this project, CNAs were surveyed about whether they had witnessed any incidents of abuse or neglect. Verbal abuse was reported as fairly common: 58 percent of the CNAs said they had seen a staff member yell at a resident in anger; 36 percent had seen staff insult or swear at a resident; 11 percent had witnessed staff threatening to hit or throw something at a resident (MacDonald, 2000).
456 ELDER MISTREATMENT These CNAs also reported that they had witnessed incidents of rough treatment and physical abuse of residents by other staff. Twenty-five per- cent of the CNAs witnessed staff isolating a resident beyond what was needed to manage his/her behavior; 21 percent witnessed restraint of a resident beyond what was needed; 11 percent saw a resident being denied food as punishment. In addition, the staff reported witnessing more explicit instances of abuse. Twenty-one percent saw a resident pushed, grabbed, shoved, or pinched in anger; 12 percent witnessed staff slapping a resident; 7 percent saw a resident being kicked or hit with a fist; 3 percent saw staff throw something at a resident; and 1 percent saw a resident being hit with an object. Reports of Abuse from Health Care Professionals There are relatively few studies of health care professionals and issues of abuse of nursing home residents, and most that exist focus on underreporting and reasons for that phenomenon. However, one study did suggest that abuse might be widespread. Emergency department physicians conducted retrospective chart review of 328 nursing home residents admit- ted to the emergency room. In nearly 1 in 5 (19 percent) of 253 cases with adequate documentation of when the injury occurred, there was an unex- plained delay in seeking medical treatment of 24 hours or more (Barlow et al., 1998). Reports of Abuse from Ombudsmen and Adult Protective Services Agencies Another source of information on abuse and neglect in nursing homes is data from the Long-Term Care Ombudsman program. The ombudsman program was established in the early 1970s to âidentify, investigate, and resolve individual and systems level complaintsâ that affect residents in nursing homes and residential care facilities (Huber et al., 2001:1). Federal funds for the program are through the Older Americans Act, and some programs also receive state funding (Huber et al., 1996). For some years, ombudsmen have reported incidents of abuse and neglect in nursing homes (Monk et al., 1984). For example, one study that surveyed agencies in 22 states reported 15,612 cases involving allegations of abuse of nursing home residents received by such agencies as Adult Protective Services, ombudsmen, and state Medicaid fraud units, which are responsible for prosecuting abuse cases involving nursing homes (Tatara, 1990). Reports of abuse and neglect from ombudsmen are thought to have
RESIDENTIAL LONG-TERM CARE SETTINGS 457 become more reliable in recent years, even as their data suggest increasing incidence. As part of their responsibilities, the ombudsman program estab- lished a National Ombudsman Reporting System (NORS), using standard- ized definitions of complaint types and resolutions (Administration on Ag- ing, 1998). The 1998 compilation of complaints received by the state Long-Term Care Ombudsman program and its parent agency, the Admin- istration on Aging, using the NORS system, found that, nationwide, physi- cal abuse was one of the five most frequent complaints to ombudsmen about nursing homes (Administration on Aging, 2000). Ten percent, or about 20,000, of the complaints received by ombudsmen during FY 1998 involved allegations of abuse, gross neglect, or exploitation, while another 5 percent related to financial abuse and misappropriation of property. In addition, ombudsmen reported more than 1,700 allegations of sexual abuse of nursing home residents during a two-year period (Burgess, personal communication,7 November 2000; see also Burgess et al., 2000). Deficiency Citations for Abuse Ninety-six percent of all facilities nationwide participate in the Medi- care or Medicaid programs or both (Strahan, 1997). These facilities are subject to annual surveys and to complaint investigations under federal law and regulation governing participation in these programs. These surveys also provide evidence of abuse and neglect in nursing homes. 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 Administrationâs (HCFA) Online Survey Certification and Reporting Sys- tem (OSCAR) for one full survey cycle (1997â1998) 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 7Personal communication and presentation at the Forensic Conference on Elder Abuse and briefing for Attorney General Reno, sponsored by the U.S. Department of Justice, Washing- ton, DC, November 2000. 8The vast majority of complaints (e.g., about two-thirds) were not substantiated, an issue discussed at greater length in the body of this report.
458 ELDER MISTREATMENT 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 Ser- vices, 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 prob- lem. The CMS/HCFA data indicated an increase in citations for deficien- cies 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. â¢ F223 is cited when a facility fails to protect its residents from abuse; â¢ F224 is cited when a facility fails to write and use policies that forbid mistreatment, neglect, abuse, and theft of residentâs property; â¢ F225 is cited when a facility fails to hire employees without histo- ries of abusive behaviors or fails to report and investigate allegations of abuse; â¢ 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 substan- tiated cases of abuse and neglect, relatively few result in a deficiency cita- tion (Hawes et al., 2001). In addition to increases in substantiated cases of abuse for which defi- ciencies are cited, there have been significant increases in citations for fail- ure 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 substanti- ated, there is rarely a deficiency citation against the facility that would be recorded as an âF-Tag.â Third, in most states the agencies responsible for investigating abuse and neglect in nursing homes acknowledge their depen-
RESIDENTIAL LONG-TERM CARE SETTINGS 459 14% 12% F223 10% F224 8% 6% F225 4% F226 2% 0% 1st Qtr 1988 1st Qtr 1999 1st Qtr 2000 FIGURE 14-1 Rates of deficiency citations for abuse, 1988â2000. dence on such reports from facilities, as illustrated by the following quote from a state official responsible for state investigations of abuse and ne- glect: 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 facilityâs 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 âis a major problem in U.S. nursing homesâ (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
460 ELDER MISTREATMENT January 2000) and included all four of the deficiency codes related to abuse (F223, 224, 225, and 226). The report concluded: â¢ 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. â¢ 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. â¢ The percentage of homes with abuse violations has been increasing, probably as a result, at least in part, of more stringent reporting require- ments and increased vulnerability among residents. â¢ The cases involving abuse included physical and sexual abuse as well as verbal abuse involving threats and humiliation. Reports from the Nurse Aide Registries One potential source of data on abuse in nursing homes is the nurse aide registries. Under federal law, states were required to establish a nurse aide registry and investigate any complaints of abuse, neglect, and misap- propriation of resident property by any nurse aide in a nursing home that participates in the Medicare or Medicaid program.9 The law provided that âif a state found that a nurse aide had neglected or abused a nursing facility resident or misappropriated property of a resident, then the state must have such information included in the stateâs nurse aide registryâ and the aide would be barred from nursing home employment.10 In addition, under federal regulations, states were obligated to determine whether facility prac- tices or policies caused or contributed to the substantiated abuse, neglect, or misappropriation. In a recent study for CMS (formerly HCFA), researchers surveyed the state agencies administering the nurse aide registries (Hawes et al., 2001). Forty of the 51 agencies responded, but those agencies varied widely in their ability to provide data and in the operation of their systems, from intake to investigation and resolution. Nevertheless, some of the results were instructive about the prevalence of abuse and neglect. For example, only 14 states provided a detailed breakdown of the types of complaints or allegations they received. However, for the vast majority (79 percent) of those states that provided a breakdown of cases by type, more than 70 9Sections 1819 (e) (2) (A) and 1919 (e) (2) (A) of the Social Security Act. 1042 CFR Ch. IV (10-1-98 Edition) Â§483.156 (a) (5) (c) (iv) (D). The lifetime ban was modified in certain cases under provisions of the 1997 Balanced Budged Act.
RESIDENTIAL LONG-TERM CARE SETTINGS 461 TABLE 14-3 Rates of Allegations per 1,000 Nursing Facility Beds Number Rate of States 1 to 6.99 per 1,000 beds 4 7 to 9.99 per 1,000 beds 3 10 to 19.99 per 1,000 beds 5 20 to 29.99 per 1,000 beds 3 >30 per 1,000 beds 5 Total states reporting = 20 of 41 surveyed. SOURCE: Hawes et al. (2001). percent of the cases involved allegations of abuse. Fewer than 20 percent of the cases involved neglect, and less than 10 percent of the reported allega- tions involved misappropriation. States also varied in the rate of complaints they received. Because of very limited data systems, only about half of the participating states could provide statistics on the total number of allegations broken out by cat- egoryâabuse, neglect, or misappropriation. As displayed in Table 14-3, there was tremendous variation in the rate of reported complaints across the states. The reported number of complaints or allegations of abuse, neglect, and misappropriation that were logged into the nurse aide registry system varied from 1 per 1,000 nursing home beds to 174 per 1,000 beds across the states that reported these statistics. It is important to note that this finding is very similar to that reported by the U.S. Department of Health and Human Services, OIG (1998), which also found widespread variability between states in reported rates. The OIG found that in the states it examined, the rates of abuse complaints varied from less than 1 percent to more than 17 percent of the stateâs nursing home population. Because of this variability and because most states were unable to break out complaints by type, it is difficult to estimate the underlying prevalence of complaints about abuse. The modal rate of complaints is between 10 and 20 complaints per 1000 beds. If this rate were applied to the 1.8 million beds nationwide, that would suggest a nationwide average of 18,000 to 36,000 complaints per year. If 70 percent of these were about abuse, then the estimate would be 12,600 to 25,200 abuse complaints annually. Of course, there is no way to discern what the underlying rate would be if all states had effective outreach and reporting systems and inclusive defini- tions of abuse and neglect. For example, in a state with a model education
462 ELDER MISTREATMENT and outreach program, the rate was 54 complaints per 1,000 beds.11,12 If that stateâs rate were applied nationwide, there would be 97,200 com- plaints, with more than 54,000 complaints about abuse. Prevalence of Neglect in Nursing Homes I have seen my roommate left lying in the bed for more than one hour with her behind exposed. I feel sorry for my roommate. They treat her so bad. She canât talk or walk. Georgia Nursing Home Resident (Atlanta Long-Term Care Ombudsman Program, 2000) Neglect is more difficult than abuse to identify and thus to quantify. Neglect is typically thought of as âthe failure by the responsible caretaker to provide services to maintain [the elderâs] physical and mental healthâ (Lachs et al., 1997). The federal definition, as applied to the nurse aide registry, is âfailure to provide goods and services necessary to avoid physi- cal harm, mental anguish, or mental illness.â The Washington state survey agency branch that manages the nurse aide registry distinguishes between two types of neglect. One type is represented by the failure to provide needed assistance and services. A second type occurs when a CNA per- forms a task inappropriately, such as doing a one-person transfer when a resident actually requires a two-person transfer for safety or when a CNA does a task for which he or she is not qualified and not supervised (e.g., performing a procedure that should be done by a licensed nurse). While the second type of neglect is distinct, the first is difficult to separate from a more general quality of care problem rooted in broader facility practices and policies rather than in the circumscribed action of one individual staff member. Sadly, there is considerable evidence of the âfailure to provide goods and services necessary to avoid physical harm, mental anguish, or mental illnessâ in the nationâs nursing homes. 11In this state with a model program, a much higher proportion of complaints addressed issues related to neglect (e.g., 56 percent were about abuse in this state, versus a national average of 70 percent; 38 percent were about neglect). In addition, most of the complaints in this model state were about verbal or psychological abuse rather than physical abuse, unlike other states. 12One state with a relatively low rate noted that it had instituted fingerprinting as part of the criminal background check for applicants for the CNA position. The state agency re- ported that the number of people rejected had quadrupled as a result of the greater accuracy of the background checks and that this might account for the drop in complaints the state experienced recently.
RESIDENTIAL LONG-TERM CARE SETTINGS 463 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 experi- enced neglect or witnessed other residents being neglected (Atlanta Long- Term Care Ombudsman Program, 2000). The kinds of things they re- ported 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 un- usual. 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 residentsâ 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 residentâs 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 Ser- vices, OIG (1999a) found that ombudsman complaints about quality of care have also been increasing in recent years.
464 ELDER MISTREATMENT 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 in- creased in 13 of 25 quality of care areas, including such problems as im- proper care for pressure ulcers, inadequate care to maximize physical func- tioning 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 GAOâs, documented inadequate treatment in one-third of the facilities in the areas of nutritional support, pressure ulcer care, prevention of contractures, pain management, and per- sonal 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. EVIDENCE ABOUT THE NATURE AND PREVALENCE OF ABUSE AND NEGLECT IN RESIDENTIAL CARE FACILITIES There are no federal standards that govern residential care facilities, which are known by more than 30 different names across the country.13 13Those names include personal care homes, adult care homes, adult congregate living facilities, residential care homes for the elderly, shelter care homes, homes for the aged, domiciliary care homes, board and care homes, and assisted living facilities.
RESIDENTIAL LONG-TERM CARE SETTINGS 465 As a result, there are no national databases containing information on deficiencies. Thus, it is even more difficult than with nursing homes to generate anything approaching estimates of the prevalence or nature of abuse of neglect. This section of the paper briefly reviews what is known about these types of facilities and issues related to abuse and neglect. What Are Residential Care Facilities? Other than nursing homes, the most common form of residential set- tings with services for people with disabilities are generically known as board and care homes, or residential care facilities (RCFs). These terms describe a variety of settings; however, in general they refer to nonmedical community-based residential settings that house two or more unrelated adults and provide some services such as meals, medication supervision or reminders, organized activities, transportation, and help with bathing, dress- ing, and other activities of daily living (ADL). RCFs are known by more than 30 different names, including adult congregate care, personal care homes, homes for the aged, adult care homes, and group homes. In addi- tion, many states have expanded the category of RCFs to include a specific classification known as assisted living (Mollica, 1998). There are three basic types of RCFs: (1) group homes serving a clien- tele with mental retardation or developmental disabilities (MR/DD); (2) homes serving persons with mental illness; and (3) homes serving a mixed population of physically frail elderly, cognitively impaired elderly, and per- sons with mental health problems. All but 7,000 facilities are in the last category and are the focus of our initiative. They serve a mainly elderly population, although many house a mixed population of frail elderly and residents who have some type of psychiatric condition. In the early 1990s, there were an estimated 46,000 licensed and unlicensed RCFs with more than 700,000 beds (Clark et al., 1994; Hawes et al., 1993; Hawes et al., 1995a). The rapid growth since then of assisted living facilities has prob- ably increased the total number of all types of residential care facilities to more than 50,000 facilities with more than 1 million beds (Hawes, et al., 1999; Assisted Living Federation of America, 1998; American Seniors Hous- ing Association, 1998). As a point of comparison, there are an estimated 16,700 licensed nursing homes with approximately 1.8 million beds serving more than 1.5 million residents (Strahan, 1997). Thus, RCFs are a signifi- cant care setting for persons with chronic illness and disability. Risk Factors: Vulnerability of Consumers Consumers in RCFs face a number of daunting challenges to protecting their interests and securing adequate health care. Indeed, many RCF resi-
466 ELDER MISTREATMENT TABLE 14-4 RCF Resident Characteristics ASPE, NC, Maine, RCF Resident Characteristic 1993a 1994b 1999 c Female 66% 66% 67% White 91% 71% 98% Black/African American 7% 29% â Aged 85+ 34% 24% 33% Average age 75 â 77 Currently married 13% 8% 8% Mental retardation/DD 11% 23% 11% Self-report mental, emotional or 33% 51% 42% (with nervous condition diagnosis) Moderate to severe cognitive impairment 40% 64% 44% Received help with 1 to 2 ADLs 21% 21% 32% Received help with 3+ ADLs 10% 20% 19% Urinary incontinence 23% 39% 37% Any behavioral symptom (e.g., wandering, physical aggression) â 29% 31% Received any psychotropic medication 41% â 40% Medicaid or SSI eligible 34% 71% 18% aThe Office of the Assistant Secretary for Planning and Evalaution (ASPE) 1993 study is based on a random sample of residents in 10 states (Hawes et al., 1995a and b). bThe 1994 North Carolina study is based on a probability sample of residents statewide (Hawes et al., 1995c). c The Maine data are from the resident universe (Fralich et al., 1997). dents exhibit the characteristics that place elders at risk of abuse and ne- glect in other settings. First, RCFs house a population with chronic disease and significant disabilities, as shown in Table 14-4 (Fralich et al., 1997; Hawes et al., 1995a, 1995b, 1995c, 2000). In particular, residents exhibit relatively high levels of cognitive impairment or another mental health condition, with the exception of residents in relatively high-level assisted living facilities (Phillips et al., 2000). Moreover, the average age of resi- dents and their level of functional and cognitive impairment have increased significantly over the last decade (Hawes et al., 1995a). Several studies confirm these findings of significant chronic disease and disability, includ- ing significant levels of cognitive impairment and behavioral symptoms, which place them at high risk for abuse and neglect (Fralich et al., 1997; Hawes et al., 1995a, b, c; Hodlewsky, 1998; Kane et al., 1991; National Investment Center Conference, 1998). A second factor that places RCF residents at risk for abuse and neglect
RESIDENTIAL LONG-TERM CARE SETTINGS 467 is that they experience considerable social isolation. Several studies found that 83 to 85 percent were unmarried, and one-quarter of the residents had no living children (Fralich et al., 1997; Hawes et al., 1995a, b, c; Phillips et al., 2000). In one study conducted in the mid-1990s, the research found that one-third of 3,200 residents in 10 states reported they had not left the facility in the preceding 14 days; 19 percent reported no visits with family or friends in the preceding 30 days; and 24 percent had visited with friends or family only one or two times in the preceding 30 days (Hawes et al., 1995b). Similarly, in a 1998 survey of a national probability sample of residents in assisted living facilities that offered high services or high pri- vacy, 9 percent reported no visit with family or friends in last 30 days, and 27 percent had visited with friends or family only once or twice in the last 30 days (Hawes et al., 2000). Thus, many residents lacked close family or friends who could be their advocates. In addition, ombudsmen programs that help fill this gap in nursing homes are largely absent in RCF settings, their activities mainly limited to complaint investigation (Phillips et al., 1994). Also, one study interviewed staff and residents and found that most residents and staff were ignorant of the ombudsman program (Hawes et al., 1995a). Third, many RCF residents have additional characteristics that have been associated with disparities between services and unmet health care needs. Many of these have been identified as risk factors for abuse or neglect in other settings. Although estimates vary across states and types of residential care facilities, an estimated one-third of residents are poorâ their care paid for by a combination of Supplemental Security Income (SSI), state supplemental payments, and Medicaid (Hawes et al., 1995a, b, c; Fralich et al., 1997). The majority of residents in traditional RCFs (outside of higher-priced assisted living facilities) would be classified as poor or near-poor (i.e., income less than 200 percent of poverty). Furthermore, about one-third of all residents have mental retardation, developmental disabilities, or persistent, severe mental illness (Fralich et al., 1997; Hawes et al., 1995a, b, c; Mor et al., 1986). As an example of disparities associ- ated with these characteristics, one 10-state study14 that included a random sample of residents found that residents with SSI as a payor were twice as likely as other residents to have unmet need for assistive devices (Hawes et al., 1995c). 14The 10 states were selected based on whether they had extensive or limited regulatory systems. Facilities were selected on a stratified, random basis, and residents were randomly selected within the study facilities.
468 ELDER MISTREATMENT Evidence of Abuse in Residential Care Facilities Unfortunately, there are no published quantitative studies of abuse in residential care facilities, and there have not even been published qualitative studies, such as focus groups, that addressed issues of abuse. The 10-state study described above interviewed staff members in RCFs using the items developed by Pillemer and Moore (1989); however, rather than interview- ing staff by telephone, these were in-person interviews. Fifteen percent of the staff reported witnessing other staff engage in verbal abuse (e.g., threats, cursing, yelling) or forms of punishment, such as withholding food, exces- sive use of physical restraints, or isolating difficult residents (Hawes et al., 1995b). The only other available estimates of abuse or neglect in RCFs are from the LTC ombudsman program and the NORS data. However, the ombuds- man presence in residential care facilities is much more limited than in nursing homes (Phillips et al., 1994). For example, ombudsmen handled 121,686 cases in FY 1998, but 82 percent of those cases were in nursing home settings; only 17 percent were residents in residential care facilities. However, of the cases handled by ombudsmen in residential care facilities and reported in NORS, physical abuse was one of the top five complaints registered with the ombudsman program (Administration on Aging, 2000). Neglect and Quality Concerns The vulnerability of consumers is particularly troubling because of long-standing concerns about quality in RCFs and residentsâ access to needed health care services. As noted above in the section on defining neglect, it is difficult to define neglect and separate it from poor quality, in general. Moreover, relatively few studies have focused on quality in resi- dential care, and most of those concentrated on medication errors and overuse of psychotropics. Thus, there is only relatively limited evidence available about neglect in residential care facilities. Several studies throughout the 1980s suggested that RCF residents were not receiving adequate care or were being neglected. Such findings included unsafe and unsanitary conditions, widespread use of psychotropic drugs suggesting some level of chemical restraints, lack of staff knowledge about medication administration, and other problems (Avorn et al., 1989; Budden, 1985; Hartzema et al., 1986; Mor et al., 1986; U.S. General Ac- counting Office, 1992a, b; U.S. House of Representatives, Select Commit- tee on Aging, 1989). These concerns were heightened in the 1990s because of the increas- ingly complex health care needs of residents and continued reports of qual- ity problems (Hawes et al., 1995a). These problems included medication
RESIDENTIAL LONG-TERM CARE SETTINGS 469 TABLE 14-5 Resident Reports of Unmet Care Needs in RCFs Known as Assisted Living Unmet Need Percent Standard Error Dressing 12 2.89 Locomotion 12 3.29 Toileting 26 12.07 Eating 0.0 0.0 Data for only those residents who received some help with that ADL. SOURCE: Phillips et al. (2000). errors, high rates of psychotropic drug use, poor management of behavioral symptoms among residents with Alzheimerâs disease or other dementias, including inappropriate use of physical restraints, and poorer functional outcomes for RCF residents compared to nursing home residents, which suggested neglect of care needs (Baldwin, 1992; Bates, 1997; Spore et al., 1995, 1996, 1997a, b; Stark et al., 1995; U.S. General Accounting Office, 1992a). In addition one study asked a national probability sample of assisted living residents who could respond about whether they had unmet care needs (Phillips et al., 2000).15 As shown in Table 14-5, among those residents who needed assistance with various ADLs, some residents did report needing more help than they received (e.g., had to wait so long for help with toileting that they wet or soiled themselves). These findings are troubling, because state policymakers wish to ex- pand the role of RCFs (Mollica, 1998). States have been permitting higher levels of acuity (e.g., admission or retention of residents who are bedfast, chairfast, or use wheelchairs), and many have begun allowing provision of daily or intermittent nursing care, skilled home care, and hospice care in RCFs (Hawes et al., 1993; Kane and Wilson, 1993; Manard, et al., 1992; Mollica, 1998). LIMITATIONS OF ESTIMATES OF PREVALENCE OF ABUSE AND NEGLECT IN LONG-TERM CARE SETTINGS The results of these studies suggest that abuse and neglect are wide- spread across residential long-term care settings. However, there is no 15This was a national probability sample of residents in ALFs that, relative to the general population of places calling themselves âassisted living,â provided either high services or high privacy.
470 ELDER MISTREATMENT definitive evidence about prevalence. There are several reasons for this. First, existing estimates are based on reports to a multiplicity of agencies, each of which uses different definitions, investigative protocols, and stan- dards of proof. Second, research and well-established protocols are needed to distinguish incidents involving abuse and neglect from the natural conse- quences of multiple chronic diseases and disabilities experienced by long- term care residents. Third, there is significant underreporting by health care professionals, residents and families, and the official mechanisms for receiving formal complaints of abuse and neglect are deeply flawed. Multiple Reporting Agencies and Differing Definitions The chief impediment to rigorous epidemiologic research has been widely differing definitions of abuse. Lachs and Pillemer (1995:437) There are multiple agencies with some responsibility for investigating cases of abuse or neglect (U.S. Department of Health and Human Services, OIG, 1998, 1999b; Tatara, 1990; Hawes et al., 2001). For residents in nursing homes and residential care facilities, those agencies differ across states but typically include ombudsmen, adult protective services, the state survey agency responsible for licensing nursing homes, the state agency responsible for the operation of the nurse aide registry, Medicaid fraud units in the attorney generalâs office, and professional licensing boards, such as the Board of Nursing or Boards of Nursing Home Administrators. As a result, the data from one agency, such as the ombudsmen, should not be taken as an indicator of the amount of abuse, because âmany abuse complaints are reported to other state agencies, not to the ombudsman programâ (Administration on Aging, 2000). In addition, the existence of multiple reporting agencies means that data on the prevalence of abuse are often incomplete, generated using different definitions and methods of data collection (Baron and Wellty, 1996). In practice, reporting individuals and agencies use different definitions and have different standards and practices for the timing and nature of investigations and for classifying an allegation as substantiated (Hawes et al., 2001; Huber et al., 2001; U.S. Department of Health and Human Services, OIG, 1999b). For example, some of the reporting agencies, such as the Boards of Nursing, use different definitions of abuse, excluding anything that would be classified as verbal or psycho- logical abuse, such as threats or yelling at a resident in anger (Hawes et al., 2001). Similarly, in general, ombudsmen are not held to a standard of beyond a reasonable doubt (Huber et al., 2001). However, in most states, the investigations of abuse by the nurse aide registries do adhere to the standard of beyond a reasonable doubt (Hawes et al., 2001).
RESIDENTIAL LONG-TERM CARE SETTINGS 471 Finally, even within the two systems that maintain a national database on abuse and neglect in nursing homesâthe NORS used by ombudsmen and the Online Survey Certification and Reporting System (OSCAR) used by state survey agenciesâthere are variations across states in the defini- tions, standards of proof, and rates of substantiation they use, despite having uniform requirements (Administration on Aging, 2000; Hawes et al., 2001; Huber et al., 2001; U.S. Department of Health and Human Services, OIG, 1991, 1999b). Difficulty Detecting and Distinguishing Abuse and Neglect from Effects of Chronic Disease Among the Aging One of the factors that complicates the task of generating accurate estimates of the prevalence of abuse and neglect is that it is often difficult to distinguish abuse from the effects of the chronic diseases found among many elderly, particularly those at risk for abuse and neglect because of their functional limitations. Signs that may indicate abuse or neglect tend to be attributed to either the normal processes of aging or to the chronic diseases and disabilities experienced by many frail elders (Wolf, 1988). The fact that some injuries thought of as potential markers for abuse may be a product of medical conditions (e.g., spontaneous fractures of the long bones among nursing home residents who were non-weight-bearing) makes the issue singularly complex (Kane and Goodwin, 1991). This problem is accentuated by the lack of care some physicians take when examining elderly residents admitted to hospitals or emergency rooms from nursing homes or residential care facilities and investigating and documenting their injuries. For example, one study examined charts of all elderly nursing home residents admitted to a Level I trauma center for an injury during 1997. The study found that 47 percent of cases reviewed had inadequate documentation to differentiate accidental trauma from abuse or neglect (Barlow et al., 1998). Widespread Underreporting As noted earlier, reporting of suspected cases of elder abuse is required in most states under mandatory elder abuse reporting laws; moreover, it is required in all states if it occurs in nursing homes under the provisions governing the Nurse Aide Registry (Hawes et al., 2001; Morris, 1998; Steigel, 1995). Despite this, there is general agreement that there is signifi- cant underreporting of cases of suspected elder abuse (Administration on Aging, 2000; American Medical Association, 1992; Atlanta Long-Term Care Ombudsman Program, 2000; Bowers et al., 2001; Pillemer and Finkelhor, 1988). Indeed, most authorities acknowledge that incidents of
472 ELDER MISTREATMENT abuse are underreported, both by mandated âreporters,â such as physicians and nurses, and by residents and families (Kleinschmidt et al., 1997; U.S. Department of Health and Human Services, OIG, 1990a; Pettee, 1997; Pillemer and Finkelhor, 1988;Tatara, 1990).16 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 stud- ies 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 16One report, however, suggested that aside from nursing home employees, hospital staff were the most likely to report abuse to an ombudsman program (Watson et al., 1993). On the other hand, as noted earlier in this paper, another study found that documentation of injuries occurring among elderly nursing home residents was inadequate to differentiate acci- dental trauma from abuse or neglect in 47 percent of the 328 cases reviewed (Barlow et al., 1998).
RESIDENTIAL LONG-TERM CARE SETTINGS 473 TABLE 14-6 Nurse Observation and Reporting Indiana Michigan Nurses Nurses Topic (percent)a (percent)b Abuse Observed 73 60 Type of Abuse Observed Physical 22 32 Psychological 10 29 Neglect 39 37 Abuse Reported 36 34 Nurse Knowledge Of... Laws on elder abuse 41 34 Mandatory reporting law 57 85 APS 72 50 Immunity 33 23 a Nurses (n = 83) in ED and home health agencies. bNurses (n = 90) in acute care (medical and surgical units) and long-term psychiatric facility. SOURCE: Adapted from Pettee (1997). studies found that the majority of nurses (59 percent and 66 percent, re- spectively) 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. 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 inter- views, 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 resi-
474 ELDER MISTREATMENT dents said reporting âwouldnât do any goodâ (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 di- rected 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 (Ad- ministration 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 re- spondents 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 âall of the timeâ (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 psycho- logical abuse as overreporting, as illustrated by the following quote from on agencyâs director/program manager. Oh, there is just tremendous overreporting. You know, things like yelling at or threatening a resident. Thatâs not really abuse, and we donât count it. Aide Registry Director (Hawes et al., 2001)
RESIDENTIAL LONG-TERM CARE SETTINGS 475 Under- reporting 33% Don't Know 15% Over- reporting 52% FIGURE 14-2 Agenciesâ views on the rate of allegations. SOURCE: 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 substan- tiation 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. Sec- ond, 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 un- comfortable 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)âor would be held to such a standard if the case were appealed to an
476 ELDER MISTREATMENT administrative law judgeâthat they would not accept cases they viewed as being essentially âhe said/she said.â 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 âan incident of unknown originâ 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 Parkinsonâs. The only move- ment 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 canât move independently in bed. . . . So then they said they didnât know how it happened. When I called the stateâs toll-free number [for the abuse hotline], I was told they couldnât do anything if the facility couldnât 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 employ- ment (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 defi- ciency data on abuse in OSCAR represent an underestimate of the preva- lence of abuse cases. Even when cases of abuse or neglect were substanti- ated, most states did not cite the facility for a sanction. Indeed, four-fifths
RESIDENTIAL LONG-TERM CARE SETTINGS 477 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 sub- stantiated cases (Hawes et al., 2001). RESEARCH CHALLENGES ASSOCIATED WITH DETERMINING THE PREVALENCE OF ABUSE AND NEGLECT IN NURSING HOMES AND RESIDENTIAL CARE FACILITIES The preceding sections were intended to show that abuse and neglect are apparently widespread and serious problems in long-term care settings. Millions of elderly are at risk over the course of their lives, and this popu- lation at risk will increase, given current demographic trends. Despite this, there is no conclusive evidence about the prevalence of abuse and neglect. Determining the nature and prevalence of abuse and neglect is important for several reasons. First, policymakers need to know how serious and extensive the problem is in order to determine the priority that should be accorded to remedying the problem. Second, information about prevalence is often an important determinant of funding for research. This section discusses issues related to research on prevalence of abuse and neglect in long-term care settings. First, we discuss nursing homes and then residential care facilities, if there are different issues. In addition to deciding on how to define abuse and neglect for purposes of research, several additional critical decisions and challenges must be addressed. Prevalence of Abuse or Neglect The available evidence has been based on extremely diverse units of analysis and resident, facility, and staff samples. Determining what the focus should be in future research is challenging. One challenge involves defining the nature of the phenomenon. Abuse is probably more easily defined operationally than neglect, because neglect and general issues of substandard quality are difficult to separate. Given that, the following are the types of questions that might reasonably be asked, but each involves a different sample design and data collection strategy. â¢ How many residents in a given period experience abuse or neglect? â¢ How many incidents of abuse and neglect occur in nursing homes or residential care facilities (e.g., one resident might experience multiple episodes of abuse over a period of time)? â¢ How many staff members have abused or neglected one or more residents? â¢ How many staff members have witnessed abuse or neglect? â¢ In what proportion of facilities does abuse or neglect occur?
478 ELDER MISTREATMENT Sampling Issues There are a number of challenging issues to be decided relative to the sample design for studies of the nature and prevalence of abuse and neglect in long-term care settings. For example, most studies seeking to establish prevalence will involve a multistage sample design. For example, a study that proposed in-person interviews with residents or staff would probably select geographic areas at the first stage, facilities at the second stage, and residents or staff at the third stage.17 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 Medic- aid. 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. In- deed, 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 facili- ties 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 facili- ties) and an even smaller proportion of beds (Clark et al., 1994; Hawes et al., 1995a). Moreover, they tend to receive special funding for program- matic 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 psychi- atric conditions. These facilities are generally licensed by state health de- partments, 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 17This will also mean that researchers will need to use analytic software, such as SUDAAN.
RESIDENTIAL LONG-TERM CARE SETTINGS 479 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 resi- dents (Krauss and Altman, 1998). Even more immediate data are available through the national database CMS maintains on all nursing home resi- dents 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 resi- dents. 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. How-
480 ELDER MISTREATMENT ever, 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 some- what 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
RESIDENTIAL LONG-TERM CARE SETTINGS 481 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 membersâfrom nurses to maintenance staffâare 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 ques- tionable behavior when they are not being interviewed in person. In addi- tion, 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 substan- tial 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, per- sonal 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: 18Karen Boyles, Atlanta Long-Term Care Ombudsman Coordinator, (404) 371-3800.
482 ELDER MISTREATMENT â¢ 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. â¢ 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. â¢ 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. â¢ 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, observa- tion 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 residentsâ 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 particu- larly problematic issue with respect to interviewing residents, because it is difficult to find a place in which they can be interviewed in privacy, com- pletely 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 residentâs 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 resi- dents. It will be important to stress that the data collection is not aimed at producing any report on individual facilities but rather at producing na- tional estimates. In addition, it will be important to ensure that residents who are selected for interviews are not placed at heightened risk for retali- ation. Furthermore, any data collection efforts must consider what the re-
RESIDENTIAL LONG-TERM CARE SETTINGS 483 sponsibility is of the field interviewers in terms of mandatory abuse report- ing 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 behaviorâfrom 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 fund- ing 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. CAUSES OF ABUSE AND NEGLECT AND IMPLICATIONS FOR RESEARCH Research on the causes of abuse and neglect may be more important even than prevalence, because it should provide clues to prevention. Such research may address resident and staff risk factors, as well as institutional and environmental factors. Research on Causes A male nurse grabbed me, slung me on the floor, and threw me into the bed. He was in a bad mood because we were short-staffed, and he had to work two floors. Georgia nursing home resident (Atlanta Long-Term Care Ombudsman Program, 2000) Facilities place CNAs in situations where abuse is bound to happen. Aide registry director (Hawes et al., 2001) Individuals come in who are not adequately trained, and then they have a heavy workload, frustrated, under-oriented, under-supervised, under-paid, under-trained. Aide registry director (Hawes et al., 2001) Although there has been only minimal research on the causes of abuse and neglect in residential long-term care settings, there is remarkable con- sensus among diverse studies and surveys of stakeholders. Three factors about which there is widespread agreement are largely situational and in- clude:
484 ELDER MISTREATMENT â¢ stressful working situations, particularly staffing shortages; â¢ staff burnout, often a product of staffing shortages and mandatory overtime; and â¢ combination of resident aggression and poor staff training on how to handle such challenging behaviors (Hawes et al., 2001; Pillemer and Bachman-Prehn, 1991; Pillemer and Moore, 1989). 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 Admin- istration, 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 qual- ity 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 TABLE 14-7 Nurse Aide Registry Agency Views on Main Causes of Abuse and Neglect Cited Cause Percenta Staffing shortages, too few staff, bad staff to resident ratios 85 Staffing shortages and difficulty hiring qualified staff 71 Poor training 61 Poor supervision, management 51 Staff turnover 63 Low wages 78 Combative residents 56 Vulnerable consumers/residents 29 aMultiple responses were allowed. SOURCE: Hawes et al. (2001).
RESIDENTIAL LONG-TERM CARE SETTINGS 485 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 âsuggest that nursing home staffing levels are inadequateâ (U.S. De- partment of Health and Human Services, Office of the Inspector General, 1999a). Too few staff, low staff-to-patient ratios, and overworked employ- ees 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). 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 âas childrenâ (Pillemer and Moore, 1989). There is this aphasic man from stroke. Heâs 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, theyâd 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 donât want my fingers in his mouth. Iâve seen what he puts in there. He puts BM [fecal matter] in his mouth and eats it. If Iâm rough with him, Iâm 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 Alzheimerâs disease, were purposive and that some ârough handlingâ by staff in response or to protect them- selves was justified and not abusive (Hawes et al., 2001).
486 ELDER MISTREATMENT Itâs OK to be a little rough with a resident if itâs 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 Alzheimerâs, they donât know what theyâre 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, itâs sort of a body mecha- nism. You raise your arm. You might hit, but itâs 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 CNAâs] 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. Itâs automatic. CNA #12 Thatâs 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 actionsâor what they termed a startle responseâwere acceptable. In part, these CNAs felt they had a right to defend and protect themselves from injury. In part, they believed the residentsâ 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. Youâre in a nursing home. I tell my staff, who is the resident? The residents, they are who weâre here to care for. CNA #9 But you know, itâs from physical reaction, not a thought process. CNA #3 Well, you canât let your physical reaction [control]. CNA #8
RESIDENTIAL LONG-TERM CARE SETTINGS 487 I agree with . . . [CNA #9]. I think the startle reaction is a result of being overly stressed and overworked. I worked on a [Alzheimerâs] 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 wouldnât 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] âWhy are you doing this?â And she looked at me, and with perfect clarity, said, âI donât know.â 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 canât control that startle thing without raising your hand to a resident, you shouldnât 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 with- out resorting to rough handling of a resident. For example, two staff members noted that their facility had a behavior committee that was spe- cially trained to deal with residents who engaged in challenging or physi- cally 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 atti- tudes 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). Implications for Research Topics The following are a few suggestions about the types of research topics that might generate better estimates of prevalence and inform efforts to prevent abuse and neglect in nursing homes and residential care facilities.
488 ELDER MISTREATMENT Are There Ways to Improve Detection? â¢ Autopsies might reveal more about prevalence if more deaths in nursing homes and RCFs were examined (Collins et al., 2000). â¢ 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. â¢ 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? â¢ What has been the role of medical directors in facilities and resi- dent 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? â¢ What is the effect of ombudsman programs? Prior studies sug- gested that the existence of the ombudsman program and presence of om- budsmen 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 substan- tiation 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 com- plaints 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 ombuds- men 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
RESIDENTIAL LONG-TERM CARE SETTINGS 489 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: â¢ Studies that identify different models of ombudsman programs and examine their effect on the prevalence of reports, substantiation rates, defi- ciency citations, and the use of enforcement sanctions. â¢ An examination of the effect of various ombudsman interventions on the prevalence and nature of abuse, including an analysis of the condi- tions 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 At- lanta Long-Term Care Ombudsman program, and the North Shore Legal Services Program. â¢ An examination of the effects of different types of training for nursing facility and RCF staff, resident and family education and empower- ment interventions provided by ombudsmen programs (effects on both de- tection and reporting as well as on prevention). Causes â¢ 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 satis- faction with wages and benefits)? â¢ 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 inter- ventions (e.g., use of behavior management teams for residents with chal- lenging behaviors)? â¢ 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? â¢ What are risk factors for individual staff membersâboth situ- ational, having to do with their work environment, and intrinsic? Prevention â¢ Evaluate different facility management styles (e.g., administrator, director of nursing, unit charge nurses) associated with variations in rates
490 ELDER MISTREATMENT and types of abuse and neglect. In particular, one might follow up on Vince Morâs âgood nursing home studyâ (Mor et al., 1986) and Bowers and Beckerâs work (1992) to determine whether certain management styles are associated with less abuse and neglect. â¢ 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. â¢ Identify and evaluate any model employee screening and hiring practices. â¢ 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). â¢ Evaluate the effect of different staffing patterns, particularly in terms of staff-to-resident ratios, on the prevalence and severity of abuse and neglect. â¢ Identify and evaluate interventions aimed at CNAs that are in- tended 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. â¢ 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. â¢ 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 main- tained over time in various types of facilities. â¢ 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 om- budsmen, facility administrators, and state agency nurse aide registry staff
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