Adult Protective Service Use and Nursing Home Placement

Transcription

1 The Gerontologist Vol. 42, No. 6, Copyright 2002 by The Gerontological Society of America Adult Protective Service Use and Nursing Home Placement Mark S. Lachs, MD, MPH, 1 Christianna S. Williams, MA, 2 Shelley O Brien, MS, 3 and Karl A. Pillemer, PhD 4 This study was supported by the National Institute on Aging Contract N01-AG , Established Populations for Epidemiologic Studies in the Elderly (EPESE). Mark Lachs is a Paul Beeson Physician Faculty Scholar and recipient of Academic Leadership Award #K from the National Institute on Aging. Karl Pillemer acknowledges support from the National Institute on Aging through a Roybal Center on Applied Gerontology Grant (1 P50 AG , K. Pillemer, PI). This paper is dedicated to the memories of Alvan Feinstein and Rosalie Wolfe, whose mentorship has profoundly influenced this work, our careers, and the field of elder mistreatment. The Investigators are indebted to the dedicated men and women of the State of Connecticut s Elderly Protective Services Program, whose tireless advocacy on behalf of frail and disenfranchised older adults continues to inspire us. Address correspondence to Dr. Mark S. Lachs, Co-Chief, Division of Geriatrics and Gerontology, The New York Hospital Cornell University Medical College, 525 East 68th Street, Box 39, New York, NY E- mail: mslachs@mail.med.cornell.edu 1Division of Geriatrics and Gerontology, The Joan and Sanford Weill Medical College of Cornell University, New York, NY. 2The Departments of Medicine and Epidemiology, Yale University School of Medicine, New Haven, CT 3Connecticut Department of Social Services, Protective Services for the Elderly Division, Hartford. 4Department of Human Development and Cornell Gerontology Research Institute, Cornell University, Ithaca, NY. Purpose: Adult Protective Services (APS) is the official state entity charged with advocacy for older adults who are victims of elder abuse or self-neglect. However, it has been speculated that APS intervention may lead disproportionately to nursing home placement (NHP). These analyses seek to determine if APS use is an independent risk factor for NHP. Design and Methods: The sample was 2,812 community-dwelling older adults who were aged 65 years or older in 1982 in the New Haven Established Populations for Epidemiologic Studies in the Elderly cohort, a subset of whom were referred to elder protective services over a 9-year follow-up period from cohort inception. NHP of cohort members over that time period was determined. Results: Rates of subsequent NHP were: 69.2% for self-neglecting subjects, 52.3% for mistreated subjects, and 31.8% for subjects who had no contact with APS (p.001, both comparisons). In proportional hazard models that included other demographic, medical, functional, and social factors associated with NHP, the strongest risk factors for placement were APS referral for self-neglect (hazard ratio [HR], 5.23; 95% confidence interval [CI], ), and for elder mistreatment (HR, 4.02; 95% CI, ). These hazards far exceeded those for other medical, functional, and social factors. Implications: APS use is an independent risk factor for nursing home placement; persons identified by APS as self-neglecting are at the highest risk. Key Words: Adult protective services, Nursing home placement, Elder abuse, Self-neglect In the early 1970s, Blenkner (1971) published a landmark paper on outcomes for older adults who received adult protective services (APS). This first longitudinal look at what was then a novel public welfare entity came to a surprising conclusion older protective services clients were disproportionately likely to die. One proposed mechanism for this effect was identified as nursing home placement (NHP) because the study also showed that APS clients were more likely to be institutionalized. At least one disturbing interpretation of Blenkner s findings was that a system intended to protect the health and independence of disenfranchised older citizens was causing institutionalization and mortality. Contemporary gerontologists familiar with the day-to-day operation of APS agencies are probably not surprised by Blenkner s (1971) findings and would likely have a different interpretation of her data that invokes the epidemiological notion of susceptibility bias. They recognize that the clients referred to protective service agencies represent some of the most frail, isolated, and medically and psychiatrically ill older members of society. To ascribe their subsequent institutionalization to APS, therefore, might be no fairer than blaming the agency for a client s heart disease. What is surprising, however, is that 30 years after the publication of Blenkner s (1971) original work, the issue of APS use and NHP has not been revisited in an epidemiologically rigorous fashion. The subject is especially compelling because the caseloads of most APS agencies are exploding at a time when state and federal resources to meet this challenge are scarce (Thomas, 2000). In previous work, we demonstrated that both self-neglecting and mistreated APS clients 734 The Gerontologist

2 are at an increased risk of death, even after adjusting for other variables (e.g., comorbidity) that predict mortality in older populations (Lachs, Williams, O Brien, Pillemer, & Charlson, 1998). Given the seriousness of the problem of elder abuse and neglect, and the growth in state APS programs, examining possible outcomes of intervention is of great importance. In this article, we explore whether APS use for abuse and self-neglect is an independent predictor of NHP after adjusting for other factors known to predict institutionalization (e.g., medical illness, functional disability, and poor social support). We accomplished this by linking a well-established community-based cohort of older adults who had detailed annual comorbidity and other data (the New Haven Established Population for Epidemiologic Studies in the Elderly [EPESE] cohort) with APS records from the same catchment area. Additionally, the cohort had been previously linked with a long-term care data registry in the state, permitting an ascertainment of NHP for all cohort members. Methods Description of the Cohort The New Haven EPESE study is one of four National Institute on Aging-funded cohorts (National Institute on Aging, 1986). In inception year 1982, the study sample consisted of 2,812 community-dwelling older adults aged older than 65 years derived from a stratified sample of residence types: public housing for elders (age and income restricted), private housing for elders (age but not income restricted), and community (no restrictions). The sample at baseline consisted of 1,643 women and 1,169 men; 593 subjects were non-white. At cohort inception, the average age of subjects was 74.0 years; 13.1% of subjects had one or more impairments in activities of daily living (ADLs); and 61.3% rated their health as excellent or good. A detailed description of the sampling strategy and sample demographic, clinical, and other characteristics have been reported elsewhere (Cornoni- Huntley et al., 1993). At baseline, subjects had a detailed interview covering broad medical, functional, demographic, and psychosocial domains. Standardized instruments were used to assess cognition, depressive symptomatology, social networks, sources of emotional and other support, and chronic conditions. Subjects were interviewed annually by telephone and every 3rd year in person. Inter-rater reliability substudies were conducted to ensure data quality and mortality follow-up is assumed to be complete. Identification of Cohort Members Placed in Long-Term Care Facilities We identfied cohort members who were placed in long-term care facilities for the purpose of custodial care through a linkage with the Connecticut Long- Term Care Registry, an information system designed to ascertain placement in certified Connecticut nursing homes. Creation of the registry preceded inception of the EPESE cohort and was complete through the end of September of For the purpose of this analysis, we censored subjects without NHP at the time of death or at the end of September We defined custodial nursing home care as a NHP from either the community or hospital in which the length of nursing home stay exceeded 30 days. During this secular period, subacute care (the use of longterm care facilities as an adjunct to hospital care with an ultimate community discharge plan) was not common; diagnosis-related groups that limit the length of inpatient stay and hospital reimbursement had only recently come into being. We excluded five subjects of the 2,812-member cohort who could not be linked to the long-term care registry. Description of Protective Services for Elders in Connecticut Although to many practicing clinicians the term adult protective services conjures images of elder abuse, most APS programs report that the vast majority of their caseload is related to self-neglect (i.e., older persons who for reasons of incapacity, inability, or choice are not receiving the necessary services to maintain physical and mental health; Lachs, Williams, O Brien, Hurst, & Horowitz, 1996). Still, referrals to APS agencies are typically predicated (and the APS response organized) on the basis of mandatory elder abuse reporting laws that have been passed and implemented by state legislatures over the past two decades. The state of Connecticut has the oldest mandatory elder abuse reporting law in the United States, enacted in 1978 (4 years before inception of the New Haven EPESE cohort). The law defines a group of mandatory reporters who are likely to have frequent contact with older adults by virtue of their occupation (such as physicians, nurses, social service providers), and are therefore in a position to identify cases of suspected elder abuse. Reports are made to a regional Ombudsman Protective Service worker in the elder protective services division who visits the older person to interview the client and any other involved party. Based on the information obtained, the Ombudsman Protective Service worker verifies or refutes a suspicion of mistreatment and assigns one or more of three designations to a case: abuse, neglect (including self-neglect), or exploitation. Elder Abuse is defined as the willful infliction of physical pain, injury, or mental anguish, or the willful deprivation by a caretaker of services necessary to maintain physical and mental health. Neglect is defined as an elderly person alone not able to provide himself or herself the services necessary to maintain physical and mental health, or who is not receiving those services from the responsible caretaker. Thus, under Connecticut definitions it is possible to be self-neglected. Exploitation is defined as taking advantage of an older adult for monetary gain or profit. The Ombudsman Protective Service worker then Vol. 42, No. 6,

3 develops a client-specific care plan that is typically multidisciplinary in nature and is intended to ensure safety while maximizing the autonomy of the older adult. Interventions vary and may include home care, physician or other health care provider referral, pursuit of guardianship, or NHP. In general, NHP officially is considered a last alternative for clients. Identification of Cohort Members Seen by the Ombudsman We performed a manual record matching of EPESE and Connecticut Ombudsman and Elderly Protective Service records to determine if any cohort members had been seen by an Ombudsman Protective Service worker over an 11-year follow-up period from cohort inception ( inclusive). The final merged data set thus contained the standardized EPESE data merged with information derived from elder protective services about the nature of the problems noted by the Ombudsman Protective Service worker in the home investigation. We performed this manual matching in such a way as to protect the confidentiality of all subjects involved (i.e., so that elder protective services had no knowledge of who were EPESE cohort members and EPESE investigators had no knowledge of which cohort members might have been seen by elder protective services; for additional detail, see Lachs et al., 1996; Lach, Williams, O Brien, Hurst, & Horowitz, 1997). Strategy of Analysis After we identified cohort members who were seen by protective services for elders, we calculated the proportion of subjects placed for custodial nursing home care in the first 9 years of follow-up from cohort inception for three subgroups: (a) those found to have experienced verified elder mistreatment (abuse, neglect, and/or exploitation), (b) those seen by protective services for corroborated selfneglect, or (c) other members of the cohort who had no contact with elder protective services. If cohort members were seen by the Ombudsman Protective Service worker but had no verified complaints, we censored them at the date of their first non-verified complaint. We adjusted all analyses for gender and housing type, which were the stratification variables in the original sampling design. We conducted subsequent multivariate analysis with days to custodial NHP as the dependent variable using Cox proportional hazards models; elder mistreatment and self-neglect were the time-dependent covariates in these models. The goal of multivariate analysis was to estimate the independent contribution of APS use to NHP after we adjusted for other factors known to predict NHP; the group of cohort members not seen by protective services for any reason served as the referent group. We selected other variables in the model based on a review of the literature of risk factors for NHP in older adults as well as the investigators extensive clinical experience in the care of older adults who have transitioned from community living to long-term care settings. Demographic variables included age, gender, race, education, and income. Health-related variables included the number of self-reported chronic conditions (among arthritis, stroke, diabetes, and hip fracture) and body mass index (BMI; in tertiles). The physical functioning domain included the presence of any ADL impairments and number of Rosow-Breslau (Rosow & Breslau, 1966) or Nagi impairments (0 to 8; Nagi, 1976). The social networks and support domain included: number of social ties (includes marital status, frequent contact with friends and relatives, regular attendance at religious services, and participation in social or community groups) and number of sources of emotional support. We used the Pfeiffer Short Portable Mental Status Questionnaire (Pfeiffer, 1975) to measure cognitive performance, whereas the Center for Epidemiologic Studies Depression scale (Radloff, 1977) reflected the psychosocial domain. For covariates having a substantial amount of missing data ( 5%), we created dummy variables so we could retain the observations with partial missing data in the multivariate models; we treated BMI and household income in this way. Results Between 1982 and 1990, 202 members of the 2,807- member cohort had been referred to protective services, with self-neglect being the most common indication for referral (Table 1). The majority of protective service referrals (81.2%) resulted in verified allegations. Table 2 shows the proportion of subjects placed in nursing homes by the end of the follow-up period by referral type. Of those individuals having corroborated protective service referrals, 52.3% of the mistreated subjects (23 of 44) had been placed in longterm care facilities by the end of the follow-up period; the corresponding rate of placement for self-neglecting subjects was 69.2% (83 of 120). Both these rates of NHP were significantly higher than for cohort members who had had no contact with protective services, 31.8% of whom had been placed in nursing homes Table 1. Use of Elder Protective Services by Members of the New Haven EPESE Cohort, (N 2,807) Reason for APS Contact n (%) Verified elder mistreatment 44 (21.8) Verified self-neglect 120 (59.4) Nonverified allegations 38 (18.8) Total 202 (100.0) Notes: Five members of the original cohort of 2,812 could not be matched with the Connecticut Long-Term Care Registry and are thus excluded from the sample for this study. One of these subjects had a verified complaint of self-neglect. The other four had no contact with Adult Protective Services (APS) between 1982 and EPESE Established Populations for Epidemiologic Studies in the Elderly. 736 The Gerontologist

4 Group Table 2. Bivariate Risk of Nursing Home Placement Given Elder Protective Service Contact (n 2,769) n Placed at End of Follow-Up n (%) p Value Verified elder mistreatment (52.3).001 Verified self-neglect (69.2).001 No APS contact 2, (31.8) Notes: Excludes 38 subjects with only nonverified complaints and five subjects who could not be matched to the Connecticut Long-Term Care Registry. p-value is based on chi-square comparison of each Adult Protective Services (APS) group to those with no APS contact. Table 3. Baseline Characteristics of Subjects by Nursing Home Placement Status During Follow-Up Characteristic Subjects Placed in Nursing Home (n 955) Subjects Not Placed in Nursing Home (n 1,852) p Value Age, M (SD) 77.2 (7.0) 73.2 (6.5).001 Male gender, n (%) 326 (34.1) 841 (45.4).001 Non-White race, n (%) 162 (17.0) 430 (23.2).001 Housing type Public age restricted 299 (31.3) 428 (23.1).001 Private age restricted 334 (35.0) 532 (28.7) Community 322 (33.7) 892 (48.2) Years of school, M (SD) 8.7 (3.7) 9.1 (3.9).009 Income $5,000/year, n (%) 378 (39.6) 593 (32.0).001 Low BMI, n (%) 315 (33.0) 522 (28.2).001 Chronic conditions, M (SD) a 0.8 (0.8) 0.6 (0.7).001 No. of medications, M (SD) 2.9 (2.3) 2.5 (2.3) SPMSQ errors, n (%) 173 (18.5) 169 (9.3).001 CES-D score 16, n (%) 213 (23.3) 248 (13.9).001 Social ties, M (SD) 1.7 (1.1) 2.1 (1.1).001 Incontinent of urine, n (%) 468 (49.4) 744 (40.5).001 Any ADL impairment, n (%) 200 (21.1) 204 (11.1).001 No. of higher function impairments, M (SD) 2.4 (2.4) 1.6 (2.1).001 Note: BMI body mass index; SPMSQ Short Portable Mental Status Questionnaire; CES-D Center for Epidemiologic Studies Depression scale; ADL activity of daily living. a Includes self-report of history of hip fracture, arthritis, stroke, and diabetes. Table 4. Proportional Hazards Regression Model for Days to First Nursing Home Admission Variable over the same follow-up period (p.001, both comparisons). Table 3 compares other variables at cohort inception for subjects subsequently placed or not placed in long-term care facilities over the follow-up period. Predictably, on average cohort members receiving NHP were older and less educated, had more chronic medical conditions, took more medicines, had higher functional impairments, and had fewer social ties than their nonplaced counterparts. Table 4 shows the final model for days to NHP, given other variables known to be associated with institutionalization. Although a variety of medical conditions, functional impairments, and chronic conditions were associated with NHP, the most potent predictor of institutionalization in the final models was APS referral for self-neglect (hazard ratio [HR], 5.23; 95% confidence interval [CI], ), and APS referral for elder mistreatment (HR, 4.02; 95% CI, ). These adjusted hazards dwarfed other demographic, medical, functional, and social risk factors traditionally associated with NHP. For example, the adjusted HR for subjects was 2.7 for subjects aged older than 80 years (95% CI, ), 1.3 for subjects with malnutrition by BMI (95% CI, ), and 1.7 for individuals with cognitive impairment as determined by the Pfeiffer SPMSQ (95% CI, ). Discussion Hazard Ratio (95% CI) p Value Verified mistreatment 4.02 ( ).001 Verified self-neglect 5.23 ( ).001 Age ( ).001 Male gender 1.12 ( ).133 Non-White race 0.53 ( ).001 Housing type Public age restricted 1.48 ( ).001 Private age restricted 1.37 ( ).001 Community Reference Years of school 1.01 ( ).447 Income $5,000/year 1.06 ( ).482 Low BMI 1.33 ( ).001 No. of chronic conditions 1.08 ( ).168 No. of medications 1.04 ( ) SPMSQ errors 1.67 ( ).001 CES-D score ( ).113 No. of social ties 0.85 ( ).001 Urinary incontinence 1.11 ( ).163 Any ADL impairment 1.32 ( ).014 No. of higher function impairments 1.08 ( ).001 Notes: Model also includes dummy variables for missing income and missing body mass index (BMI). SPMSQ Short Portable Mental Status Questionnaire; CES-D Center for Epidemiologic Studies Depression scale; ADL activity of daily living; CI confidence interval. A number of studies have looked at rates and risk factors for NHP (Branch & Jette, 1982; Cohen, Tell, & Wallack, 1986). In the present study, we found that APS referral for any indication is a compelling predictor of NHP, even after we adjusted for other factors known to be associated with institutionalization in the older population. Furthermore, we found that the relative contribution of elder protective referral to NHP is enormous and far exceeds the variance explained by other variables such as dementia, functional disability, and poor social networks. For example, Foley and colleagues (1992) found that ADL and cognitive impairment conferred a risk of placement of Vol. 42, No. 6,

5 between 2- and 3-fold in the three EPESE cohorts, far lower than the 4- to 5-fold risk conferred by elder mistreatment and self-neglect, respectively, found in our study. We recognize that we must view these findings with some caution. In particular, we must take into consideration the time frame of the study. First, discussions with APS administrators have convinced us that many states moved to a stronger position of encouraging autonomy of clients than existed during the 1980s and early 1990s. Second, over the past decade, several changes in the nursing home environment have likely affected this process. Changing reimbursement strategies for nursing home entry have made institutionalization for social reasons much more difficult. At the same time, less restrictive supported living environments have proliferated on a wide scale. It is therefore possible that APS involvement has become less strongly correlated with NHP over time. Replication of the present study using current data should be a high priority. Another possibility is that service utilization in general, rather than APS use specifically, may increase probability of NHP, and that other service interventions (such as case management) might be driving the phenomenon. McFall and Miller (1992), using the National Long-Term Care Survey, found that the use of formal services in the community was a predictor of nursing home admission. Similarly, Whitlatch, Feinberg, and Stevens (1999) found that receiving respite assistance among caregivers predicted NHP of the care recipient. Although these findings are by no means definitive, studies should address whether the key issue is any service use, rather than APS use. The possibility remains, however, that APS involvement is in fact associated with NHP. That two studies separated by 30 years have provided the same general result suggests that this possibility must be seriously considered. Indeed, one of the arguments raised against the mandatory reporting of elder abuse and neglect is the concern that, in the absence of comprehensive community services for victims, APS workers may feel pressed to resolve difficult situations through NHP (Wolf & Pillemer, 1989). We also firmly believe that NHP is not necessarily an evil or adverse outcome of APS involvement. As clinicians who have participated in many APS cases, we observed that often nursing home placement resulted in dramatic improvements in quality of life that was apparent to all observers including APS clients themselves. Research is critically needed to shed further light on this issue. Given that APS is widely recognized to have begun in its current form in the 1950s (Mixson, 1995), it is remarkable that controlled studies of differential outcomes of APS have not yet been conducted. A review of the literature shows no systematic attempt to evaluate program outcomes or to examine unintended consequences of APS intervention. Given the findings of the present study, APS should be subjected to rigorous evaluation research. Further research of a qualitative or ethnographic nature is also necessary to determine how day-to-day actions and decisions on the part of APS workers and their clients might lead to premature NHP. Alternatively, other variables may be important in determining placement. For example, unmeasured in the present study is the physical living environment. In the case of self-neglect, lack of suitable alternative housing may contribute to NHP. Such careful examination is needed to insure that the misfortune of mistreatment or neglect is not compounded by premature or avoidable institutionalization. The concept of self-neglect merits separate discussion as it relates to APS and NHP. Most, but not all state protective service agencies include the category of self-neglect in their caseloads, and this may influence the generalizabilty of this study. Self-neglect is a fundamentally different entity than elder mistreatment perpetrated by another party. Poorly understood and profoundly understudied, postulated causes for selfneglect include dementia, depression, alchoholism, or simply the inability or unwillingness to navigate the health and social welfare systems that might avert the need for NHP. In conclusion, the need for APS may seem selfevident to many observers, in the same sense that protective services are needed for mistreated or neglected children. However, those familiar with the day-to-day workings of APS agencies likely find the analogy to child protective services an oversimplification. First, family violence is only part of the caseload of APS agencies. The majority of their work involves self-neglecting older adults who for reasons of inability, incapacity, or choice are living in circumstances that most in society would deem undesirable or unsafe. Secondly, unlike children, older adults are assumed to have legal rights about remaining in an ostensibly precarious environment unless adjudicated to lack capacity on a guardianship or similar legal proceeding. For these reasons, the positive benefits of APS intervention must be scientifically documented, to justify the possible risk of negative outcomes such as institutionalization. References Blenkner, M. (1971). A research and demonstration of protective services. Social Casework, 52, Branch, L. G., & Jette, A. M. (1982). A prospective study of long-term care institutionalization among the aged. American Journal of Public Health, 72, Cohen, M. A., Tell, E. J., & Wallack, S. S. (1986). Client-related risk factors of nursing home entry among elderly adults. Journal of Gerontology, 41, Cornoni-Huntley, J., Ostfeld A. M., Taylor J. O., Wallace, R. B., Blazer, D., Berkman, L. F., et al. (1993). Established Populations for Epidemiologic Studies of the Elderly: Study design and methodology. Aging, 5, Foley, D. J., Ostfeld, A. M., Branch, L. G., Wallace, B. B., McGloin, J. M., & Cornoni-Huntley, J. C. (1992). The risk of nursing home admission in three communities. Journal of Aging and Health, 4, Lachs, M. S., Williams, C., O Brien, S., Hurst, L., & Horwitz, R. (1996). Older adults: An 11-year longitudinal study of adult protective service use. Archives of Internal Medicine, 156, Lachs, M. S., Williams, C., O Brien, S., Hurst, L., & Horwitz, R. (1997). Risk factors for reported elder abuse and neglect: A nine-year observational cohort study. The Gerontologist, 37, Lachs, M. S., Williams, C., O Brien, S., Pillemer, K., & Charlson, M. E. (1998). The mortality of elder mistreatment. Journal of the American Medical Association, 280, McFall, S., & Miller, B. H. (1992). Caregiver burden and nursing home admission of frail elderly persons. Journal of Gerontology: Social Sciences, 47, S73 S The Gerontologist

6 Mixson, P. M. (1995). Adult protective services perspective. Journal of Elder Abuse and Neglect, 7, Nagi, S. Z. (1976). An epidemiology of disability among adults in the United States. Milbank Memorial Fund Quarterly, 54, National Institute on Aging. (1986). Established Populations for Epidemiologic Studies of the Elderly: Resource data book (National Institutes of Health Publication No ). Washington, DC: U.S. Department of Health and Human Services. Pfeiffer, E. (1975). A Short Portable Mental Status Questionnaire for the assessment of organic brain deficit in elderly patients. Journal of the American Geriatrics Society, 23, Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, Rosow, I., & Breslau, N. (1966). A Guttman health scale for the aged. Journal of Gerontology, 21, Thomas, C. (2000). First national study of elder abuse and neglect: Contrast with results from other studies. Journal of Elder Abuse and Neglect, 12, Whitlatch, C. J., Feinberg, L., & Stevens, E. J. (1999). Predictors of institutionalization for persons with Alzheimer s disease and the impact on family caregivers. Journal of Mental Health and Aging, 5, Wolf, R. S., & Pillemer, K. (1989). Helping elderly victims: The reality of elder abuse. New York: Columbia University Press. Received November 21, 2001 Accepted February 15, 2002 Decision Editor: Laurence G. Branch, PhD Vol. 42, No. 6,