Racial Differences in Hospice Use and In-Hospital Death Among Medicare and Medicaid Dual-Eligible Nursing Home Residents

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1 The Gerontologist Vol. 48, No. 1, Copyright 2008 by The Gerontological Society of America Racial Differences in Hospice Use and In-Hospital Death Among Medicare and Medicaid Dual-Eligible Nursing Home Residents Jung Kwak, PhD, 1 William E. Haley, PhD, 2 and David A. Chiriboga, PhD 3 Purpose: We investigated the role of race in predicting the likelihood of using hospice and dying in a hosptial among dual-eligible (Medicare and Medicaid) nursing home residents. Design and Methods: This follow-back cohort study examined factors associated with hospice use and in-hospital death among non-hispanic Black and non-hispanic White dual-eligible nursing home residents (N = 30,765) who died in Florida during one of three years: 2000, 2001, or We used logistic regression models to identify independent predictors of hospice use and in-hospital death. Results: After we controlled for other factors, Black residents were significantly less likely to use hospice and more likely to die in a hospital. Principal cause of death moderated the relationship between race and hospice use: Black residents were significantly less likely to use hospice than White residents among residents without cancer as principal cause of death, but there was no difference among residents with cancer as cause of death. Further analyses for each racial group revealed that the impact of cause of death in predicting hospice use was greater among Black residents than White residents. Implications: Hospice care offers many benefits, including reduced risk of in-hospital This research was supported in part by a grant from the Florida Agency for Health Care Administration. The research was conducted in partial fulfillment of a doctoral dissertation at the University of South Florida, and we would like to thank Drs. Glenn Mitchell, Susan McMillan, and William Rowe for their participation on the doctoral committee. Additional assistance from Drs. Bill Kearns, Karl Kosloski, and Larry Polivka is also gratefully acknowledged. Address correspondence to Jung Kwak, PhD, Center on Age and Community/Applied Gerontology, University of Wisconsin, Milwaukee, Enderis Hall 1055, P.O. Box 786, Milwaukee, WI kwak@uwm.edu 1 Center on Age and Community/Applied Gerontology, University of Wisconsin, Milwaukee. 2 School of Aging Studies, University of South Florida, Tampa. 3 Department of Aging and Mental Health, Louis de la Parte Florida Mental Health Institute, University of South Florida, Tampa. death, but Black nursing home residents are less likely to use hospice and may have different perceptions of need for hospice care compared with White residents. Future research and outreach efforts should focus on developing culturally sensitive, diseasefocused end-of-life education and communication interventions that target residents, families, nursing home providers, and physicians. Key Words: End of life, Race, Place of death A significant number of older adults spend time in nursing homes during their last year of life (Hogan et al., 2000; Mezey, Dubler, Mitty, & Brody, 2002). About 20% of all U.S. deaths occur in nursing homes (Mezey et al., 2002), and among those dying in nursing homes, an increasing number spend their last days in a hospice program (Medicare Payment Advisory Commission [MedPAC], 2002). In 2000, nursing home residents represented 36% of Medicare hospice beneficiaries, a significant increase from the 11% reported for 1992 (Hogan et al., 2000; MedPAC, 2002). Hospice is a program specifically designed to provide end-of-life care in community, long-term, and acute care settings. For residents in nursing facilities offering hospice care about 76% of nursing homes in the United States and 96% in Florida (Miller & Mor, 2004) a hospice team takes full responsibility of coordination and management of the patient s medical and psychosocial care while the facility provides personal care services (Miller & Mor, 2004). Past research has suggested that nursing home residents accrue many benefits under hospice care, including less time spent in hospitals (Gozalo & Miller, in press; Miller, Gozalo, & Mor, 2001) and better pain management (Miller, Mor, Wu, Gozalo, & Lapane, 2002). Among Medicare and general patient populations, patients and families have reported 32 The Gerontologist

2 higher satisfaction with care (Kane, Wales, Berstein, Leibowitz, & Kaplan, 1984; Teno et al., 2004), and patients are more likely to die in place (Hogan et al., 2000; Teno et al., 2004), under hospice care. Despite many benefits and the availability of hospice coverage through Medicare and Medicaid (the primary sources of coverage for hospice benefits), underutilization of hospice services has been of concern ever since the Medicare hospice benefit was first created in Over time it has become clear that this underutilization is particularly pronounced among nursing home residents and minority older adults (Gordon, 1995; Hoffmann & Tarzian, 2005; MedPAC, 2004). In addition, Black residents are more likely to be hospitalized at the end of life than their White counterparts (Mor, Papandonatos, & Miller, 2005), although hospitalization at the very end of life is costly and can lead to painful and debilitating procedures that do not extend life (Engle, 1998; Mezey et al., 2002). The literature, however, suggests that Blacks are more likely to prefer aggressive treatments and, thus, less likely to use hospice and more likely to die in hospitals. The reasons underlying this preference are many and draw from Blacks lower socioeconomic status and resources; historical experiences of receiving inadequate and disrespectful treatment by the medical and health care community; and spiritual, religious, and cultural values that may conflict with hospice philosophy (i.e., emphasis on palliative rather than curative treatment; Enguidanos, Yip, & Wilber, 2005; Gordon, 1995; Greiner, Perera, & Ahluwalia, 2003; Kwak & Haley, 2005; Reese, Ahern, Nair, Schrock, & Warren-Wheat, 1999). Among nursing home residents with cognitive impairment, national studies have reported evidence that nursing facilities with a higher proportion of non-white residents are less likely to have do-nothospitalize orders and more likely to use feeding tubes (Mitchell, Teno, Intrator, Feng, & Mor, 2007; Mitchell, Teno, Roy, Kabumoto, & Mor, 2003). One conclusion drawn from these studies is that when Blacks are well represented among residents, their preference for aggressive care may encourage nursing facility staff to facilitate aggressive end-of-life care (Mitchell et al., 2007). Although a number of studies have examined racial differences at the end of life, little is known about the experiences of dual-eligible (Medicare and Medicaid) nursing home residents, a group that is not only the least studied but potentially the most vulnerable. Most previous studies on racial differences in hospice use and hospitalization have focused on cancer patients and general Medicare nursing home or adult populations (Han, Remsburg, & Iwashyna, 2006; Lackan et al., 2004; Mor et al., 2005; Virnig, Moscovice, Durham, & Casey, 2004). A few exceptions have examined dual-eligible older adults or nursing home residents (Enguidanos et al., 2005; Miller et al., 2004). Yet the estimated 1.25 million dual-eligible nursing home residents are of special interest for policy makers due to their very high utilization of public funds and such risk-related characteristics as poor health, lower income, and an overrepresentation of minorities (MedPAC, 2004; Schneider, 2003). Given the importance of understanding end-of-life experiences among dual-eligible, minority nursing home residents, the present research investigated the role of race in using hospice and dying in a hospital among Black and White dual-eligible nursing home residents. Focusing on dual-eligible nursing home residents allowed the study to investigate racial differences in end-of-life experiences among people who have a restricted range of financial assets. A Conceptual Model Most prior studies on racial differences in hospice use and place of death have been atheoretical, a problem that has been a major limitation of existing end-of-life research (George, 2002). The present study was guided by the behavioral model of health service utilization initially developed by Andersen (1968). Researchers have used this behavioral model extensively to identify access disparities and other barriers to health services utilization across racial and ethnic groups (Aday & Awe, 1997). The behavioral model describes three categories of factors influencing health services utilization: predisposing, enabling, and need (Andersen, 1968, 1995). Predisposing factors describe the general social forces affecting the propensity of individuals to use health services (e.g., age, gender, race). Enabling factors reflect family and economic resources that enable the use of service (e.g., social network, insurance availability, geographic location of residence). Need factors refer to illness level or need for care (e.g., diagnosis) and are often the most immediate cause of health service use. The behavioral model also classifies types of services into discretionary and nondiscretionary categories based on the level of choice on the part of individuals or families. In addition to direct effects of predisposing, need, and enabling factors, the behavioral model (Andersen, 1968) and other studies on long-term and health care services (Kosloski, Montgomery, & Karner, 1999; Wolinsky & Johnson, 1991) suggest an interactive nature to the relationship between predisposing and need factors. For example, race can moderate the relationship between illness and perceived need for a particular discretionary service (Kosloski & Montgomery, 1994; Kosloski et al., 1999). Previous research has not extensively explored the moderating effect of race on primary illness as a need factor with hospice as a discretionary service. In this study, we conceptualized hospice service as discretionary due to the explicit requirement of Medicare and Medicaid for beneficiaries to make a decision to give up curative Vol. 48, No. 1,

3 treatment options to receive hospice care. Such specific decision to choose between different types of treatments for residents is not mandatory for the decision to hospitalize, and, thus, we considered hospital stay on the last day of life to be nondiscretionary (i.e., less discretionary than hospice service). Research Questions There were three major research questions in this study: (a) Does a racial difference exist in hospice use after accounting for other predisposing, need, and enabling factors? (b) Does race moderate the relationship between cause of death and hospice use? and (c) Does a racial difference exist in dying in a hospital after controlling for other factors and hospice use? For the first question, we hypothesized that Black residents would be less likely to use hospice even after we controlled for other factors. Based on findings from previous studies, other predisposing, enabling, and need factors included as covariates were age, gender, education, marital status, urban/rural residence, short-term/long-term nursing home status, and diagnosis of cancer of any type (Gozalo & Miller, in press; Greiner et al., 2003; Teno, Weitzen, Fennell, & Mor, 2001; Virnig et al., 2004). The second research question examined whether Black residents would perceive the need for hospice differently than White residents due to different cultural norms and expectations regarding end-oflife care. We expected that race as a proxy for culture would moderate the impact of the main cause of death on hospice use. We based this hypothesis on consistent findings that Blacks prefer more aggressive end-of-life care and treatment compared with Whites (Kwak & Haley, 2005) and the requirement of Medicare and Medicaid for beneficiaries to choose between curative and hospice care options. For the third question, we hypothesized that Black residents would be more likely to die in a hospital than White residents after other predisposing, enabling, and need factors were controlled (Pritchard et al., 1998; Weitzen, Teno, Fennell, & Mor, 2003). We also expected that the main effect of race on predicting in-hospital death would be attenuated after the hospice enrollment effect was accounted for, as studies have shown that hospice reduces hospitalization at the end of life (Enguidanos et al., 2005; Gozalo & Miller, in press). Methods Data Sources This was a follow-back study utilizing a Florida Medicaid Long-Term Care Analysis file. The latter was built from Florida Medicaid eligibility and claims records, and from Florida Department of Health death certificates stored and managed at the State Data Center on Aging, School of Aging Studies, University of South Florida. In addition, the Agency for Health Care Administration provided an extended hospice claims file from the Medicaid Program Analysis data file. We obtained permission from the Agency for Health Care Administration and the Department of Health to use information from the databases, and the research met all of the requirements of University of South Florida Health Insurance Portability and Accountability Act policies. Study Sample We defined the study sample as dual-eligible nursing home residents aged 65 and older who died during one of three state fiscal years (2000, 2001, and 2002) in Florida. To be included, individuals needed to be (a) dually eligible for nine consecutive months during the last 12 months of life, (b) aged 65 and older, (c) either non-hispanic Black or non-hispanic White, (d) either short-term or long-term nursing home residents, and (e) without cause of death recorded as traumatic or sudden (these individuals would not have been eligible for hospice services). From the initial study sample of 118,703 Medicaid beneficiaries aged 18 and older who died between state fiscal years 2000 and 2002, we deleted 1,036 decedents with manner of death recorded as traumatic or sudden. Of the remaining 117,667 Medicaid decedents, 67,562 (57%) were dually eligible for Medicare and Medicaid for at least 9 months; of these, 34,081 decedents were aged 65 and older and either long-term or short-term nursing home residents. Additionally, we deleted a further 3,316 nursing home residents who were neither non- Hispanic Black nor non-hispanic White, yielding a final sample of 30,765. We decided to focus only on racial differences between non-hispanic Black and non-hispanic White residents because of tremendous variations in the reliability and validity of ethnic variables across administrative data systems (Arispe, Homes, & Moy, 2005). Chen, Chen, and Mehra (2005), for example, found that although the identification of Whites and Blacks in a statewide Florida Medicaid data set was more than 90% accurate, accuracy was substantially lower for other groups. Dependent Variables The dependent variables included hospice use and in-hospital death. For hospice use as a dependent variable, we considered any use of hospice during the last year of life recorded in the Medicaid Program Analysis data file as use of hospice (hospice = 1, no hospice use = 0). We determined in-hospital death by place-of-death information recorded in the death certificate record (places of death included hospital inpatient, emergency room, outpatient medical 34 The Gerontologist

4 facilities, dead on arrival; nursing home; private residence; and others). We recoded this variable into three discrete variables: death at hospital (yes = 1, no = 0), death at nursing home (yes = 1, no = 0), and death at other place (yes = 1, no = 0). We then categorized these into the final variable: in-hospital death (yes = 1, no = 0). Independent Variables All independent variables were available from the Medicaid Long-Term Care Analysis file except for education and Hispanic ethnicity, which were available from the death certificate record. We used the Hispanic ethnicity variable to identify Black and White nursing home residents who were not of Hispanic ethnicity. Predisposing Factors. Age and education were continuous variables measured in years. Categorical variables included gender (female = 1 and male = 0) and race (non-hispanic Black = 1, non-hispanic White = 0). Enabling Factors. We categorized marital status into two groups: married (coded as 1) and nonmarried (coded as 0). We reviewed zip codes based on the Rural Urban Commuting Areas code developed for the State of Florida and recoded them into two categories: urban (1) and rural (0). To be considered a long-term nursing home resident, the decedent had to have a documented record of nursing home stay during the last three or more consecutive months of life. If a recipient had a record of nursing home stay during any of the last three consecutive months of life that was less than three consecutive months, the person was considered a short-term nursing home resident. Need Factors. We determined the principal diagnosis of cancer or noncancer condition as principal cause of death by examining the reported cause of death on the death certificates. We initially categorized and recoded the principal cause of death variable into eight discrete variables: cancer, heart, congestive heart failure, chronic obstructive pulmonary disease, stroke, renal failure, dementia/ Alzheimer s disease, and other. In the multivariate models predicting hospice use and in-hospital death, we recategorized the need variable into four binary variables: cancer, dementia/alzheimer s disease, heart disease (including congestive heart failure), and other (as a reference category). dependent variables (hospice use and in-hospital death). Descriptive analysis results included means with standard deviations and percentages. We performed Pearson s correlations and point-biserial correlation on all independent and dependent variables for the sample. We found no evidence for multicollinearity among variables except for a very high negative correlation (r =.91) between inhospital death and nursing home death. The high negative correlation between nursing home death and in-hospital death was due to the fact that other places of death accounted for only 4% of all deaths. The choice of multivariate analysis method for research questions was a binomial logistic regression, and we estimated a predictive model separately for each of the two outcome variables. For the predictive model of hospice use, we first entered predisposing, enabling, and need factors (Model 1) followed by interaction terms (Model 2). We tested the interaction between race and need variables by entering two Race 3 Need interaction terms (Race 3 Cancer and Race 3 Dementia/Alzheimer s disease). For the model predicting in-hospital death, we first entered predisposing, enabling, and need factors and then followed with hospice use (Model 2), Using chi-square tests, we compared the 2 log likelihood values of subsequent models to evaluate the model fit. Results Study Sample Characteristics The dual-eligible nursing home residents in this study were, on average, 86 years old, female (73%), White (85%), residing in a urban area (87%), longterm nursing home residents (74%), with 11 years of formal education (see Table 1). About 5% of the residents died of cancer, whereas 37% and 15% died of heart disease or some form of dementia, respectively. The most common place of death was nursing home (69%), followed by hospital (27%), other (2.5%) and home (1.5%). About 28% of residents used a hospice service. A higher proportion of hospice residents than non-hospice residents were White (89% vs 84%) and died in a nursing home (93% vs 60%). A higher percentage of White residents were married, died of dementia or Alzheimer s disease, and used hospice compared with Black residents. At the same time, a smaller proportion of White residents died in a hospital compared to Black residents (24% vs 42%). Figure 1 shows rates of hospice use and in-hospital death by racial groups and main causes of death. Statistical Approach We conducted descriptive analyses of all predisposing, enabling, and need factor variables and two Hospice Use When we entered predisposing, enabling, and need characteristics (Model 1), gender, race, marital Vol. 48, No. 1,

5 Table 1. Residents Aged 65 and Older by Hospice Use and Race (N = 30,765) Factor All (N ¼ 30,765) Hospice (n ¼ 8,529) Non-Hospice (n ¼ 22,236) Non-Hispanic White (n ¼ 26,271) Non-Hispanic Black (n ¼ 4,494) Predisposing Age (years), M 6 SD Gender: Female, % Education (years), M 6 SD Race: Non-Hispanic Black, % Enabling, % Marital status: Married Area of residence: Urban Nursing Home Status: Short-term Need, % Cause of death Cancer Dementia a Heart disease b Other Outcomes, % Any hospice use Place of death Hospital Nursing home Home Other Notes: a Includes Alzheimer s disease. Includes congestive heart failure. status, urban/rural status, nursing home status, and cause of death significantly predicted hospice use (see Table 2). Among these, cause of death was the strongest predictor: Cancer increased the likelihood of using hospice more than threefold (odds ratio [OR] = 3.46), and dementia/alzheimer s disease increased the likelihood by 71%. Among predisposing and enabling factors, being female, married, and a resident of urban areas increased the likelihood of receiving hospice by 9%, 16%, and 36%, respectively, whereas short-term residents were 82% less likely to use hospice than long-term residents. Black residents were 20% less likely to use hospice than White residents after we controlled for all other variables. We added interaction terms in Model 2 (see Table 2). As predicted, we found a significant interaction between race and need on hospice use. However, this effect was significant only when we examined race and cancer as principal cause of death, v 2 (2, N = 30,765) = 8.05, p,.05. Among residents with noncancer principal cause of death, Black residents (n = 4,147) were less likely (19.3% vs 27.7%) to use hospice than Whites (n = 24,944). However, Black Figure 1. Rates of hospice use and in-hospital death by race. 36 The Gerontologist

6 Table 2. Logistic Regression Models Predicting Hospice Use Model 1 Model 2 Factor OR 95% CI OR 95% CI Predisposing Age Gender: Female ** ** Race: Non-Hispanic Black *** *** Education Enabling Marital status: Married *** *** Area of residence: Urban *** *** Nursing home status: Short-term *** *** Need Cause of death Cancer *** *** Dementia a *** *** Heart disease b Interaction Race 3 Cancer: Black with cancer ** Race 3 Dementia: Black with dementia a log likelihood 33,246 33,238 Notes: OR = odds ratio; CI = confidence interval. Includes Alzheimer s disease. Includes congestive heart failure. **p,.01; ***p,.001. residents with cancer as principal cause of death (n = 347) were as likely as their White counterparts (n = 1,329) to use hospice (45.8% vs 49.7%). To determine how race moderated the way in which cause of death influenced hospice use, we estimated separate hospice use models for each racial group (see Table 3). We report pseudo R 2 estimates to enable a better understanding of the relative impact of predictor variables. The separate predictive models showed that gender, education, marital status, and area of residence (Step 1) had a significant impact on using hospice for White residents but not for Black residents. Principal cause of death was more important for Black residents, explaining almost twice as much variance as for White residents (Step 2). Table 3. Models of Hospice Use by Race Factor Whites Blacks Predisposing Age (0.002) (0.004) Gender (0.036)* (0.090) Education (0.005)* (0.012) Enabling Marital status: Married (0.041)** (0.112) Areas of residence: Urban (0.046)*** (0.122) Nursing home status: Short-term (0.047)*** (0.107)*** Pseudo R 2 for predisposing and enabling variables (Step 1) 0.103*** 0.119*** Need Cancer (0.063)*** (0.133)*** Dementia a (0.040)*** (0.132)*** Heart disease b (0.033) (0.088) Pseudo R 2 for need variables (Step 2) 0.025*** 0.047*** Notes: Data are b (SE), except where indicated. Includes Alzheimer s disease. Includes congestive heart failure. *p,.05; **p,.01; ***p,.001. Vol. 48, No. 1,

7 Table 4. Logistic Regression Models Predicting In-Hospital Death Model 1 Model 2 Factor OR 95% CI OR 95% CI Predisposing Age *** *** Gender: Female ** ** Race: Non-Hispanic Black *** *** Education Enabling Marital status: Married ** Area of residence: Urban ** Nursing home status: Short-term *** *** Need Cause of death Cancer *** *** Dementia a *** *** Heart disease b *** *** Hospice *** 2 log likelihood 33,123 29,889 Notes: OR = odds ratio; CI = confidence interval. a Includes Alzheimer s disease. Includes congestive heart failure. **p,.01; ***p,.001. In-Hospital Death When we entered predisposing, enabling, and need factors (Model 1), all variables except education significantly predicted the likelihood of inhospital death (see Table 4). Being of older age (OR = 0.97); being female (OR = 0.90), married (OR = 0.89), or an urban resident (OR = 0.88); and having cancer (OR = 0.34), dementia/alzheimer s disease (OR = 0.30), or heart disease (OR = 0.74) reduced the likelihood of dying in a hospital. Black and short-term residents were significantly more likely to experience in-hospital death (ORs = 1.81 and 1.44, respectively). When we added hospice in the final model (Model 2), Black residents were still more likely to die in a hospital (OR = 1.79), although hospice substantially reduced the likelihood of in-hospital death (residents who used hospice were 92% less likely to die in a hospital). Marital status and urban/rural status were no longer significant in Model 2. Discussion Understanding racial differences in end-of-life service utilization and identifying potential barriers to using hospice and dying in place among older adults have become increasingly important areas of research. There are three important sets of findings from our study that further guide understanding of these issues. First, we found that although the overall hospice use rate among nursing home residents was low (28%), Black residents were significantly less likely to use hospice than Whites even after we controlled for other predisposing, enabling, and need factors. This finding is consistent with those of studies among older adults (e.g., Enguidanos et al., 2005). However, the current study examined the multiple factors influencing hospice use and place of death among dual-eligible nursing home residents guided by the behavioral model. This is in contrast to previous studies, which have typically been atheoretical and focused on general older adult populations. Although a recent national study by Han and colleagues (2006) found a reduced gap in hospice use between Black and White patients at a broad terminal patient population level, our findings indicate that substantial differences in hospice use remain in this subgroup of dual-eligible nursing home residents in Florida, a state where 96% of nursing homes have contractual relationships with hospice organizations to offer hospice care to eligible residents. Previous studies have suggested low socioeconomic status and cultural preferences for aggressive treatments as underlying reasons for underutilization of hospice among Black older adults. However, the fact that Black residents were less likely to use hospice even among dual-eligible nursing home residents (with low income and poorer health) after we controlled for education suggests that the racial differences reported herein are unlikely to be the result of differing socioeconomic status. Although race is only a proxy for culture (Dilworth-Anderson, Williams, & Gibson, 2002), cultural preferences of Black residents in part may contribute to their lower 38 The Gerontologist

8 hospice utilization as suggested by previous studies (Enguidanos et al., 2005; Gorden, 1995; Greiner et al., 2003; Reese et al., 1999). Second, another important finding of this study is the difference in the way predisposing, enabling, and need factors influence hospice use among Black and White residents. We found that it was only among residents who died from principal causes other than cancer that Black residents were less likely to use hospice. In further analyses, we found that whereas gender, education, marital status, and urban residence significantly increased the likelihood of hospice use only among White residents, cause of death had the greater effect in increasing the likelihood among Black residents. Given the large sample size of the study, statistically insignificant associations between hospice and gender, education, marital status, and urban/rural status among Black residents are particularly noteworthy. Although principal cause of death was the strongest predictor of hospice use among both racial groups, the fact that cause of death had a greater influence on hospice use among Black residents suggests that the two racial groups may perceive the need for hospice differently. Research has consistently reported that Blacks prefer aggressive treatments at the end of life (Kwak & Haley, 2005), and it is possible that this cultural preference exerts greater influence when there is less certainty regarding the trajectory of the given illness. Cancer has a relatively predictable illness trajectory compared to other illnesses, and it is also the most common diagnosis among hospice patients (National Hospice and Palliative Care Organization, 2005). With the relatively predictable progression of cancer and a more advanced knowledge base available to determine its prognosis, accepting a prognosis of terminal cancer and hospice while forgoing curative treatment options may be more acceptable for Black residents with cancer than those with noncancer illnesses. One implication of these results for future interventions is that it may be particularly important for Black residents and their families to receive specific and detailed information regarding the possible trajectories of the illness and potential courses of treatments to help form a realistic assessment of the illness and the best care approach to meet their needs. A recent randomized controlled study of nursing home residents (Casarett et al., 2005) showed that a simple educational and communication intervention can significantly improve timely and appropriate referral of residents to hospice care, even among racially diverse nursing home residents. Replicating a simple intervention such as that used in the study by Casarett and colleagues, with additional efforts to improve culturally competent communication skills of nursing home and other medical staff, may help end-of-life decision-making processes among nursing home residents, their families, and health care staff. Furthermore, it appears important for nursing home residents to have access to alternative approaches to end-of-life care that do not require 6-month prognosis or forgoing curative treatment options as required by the Medicare hospice benefit. Studies have shown promising results for diseasebased care management programs and bridge programs that provide palliative care for patients with serious chronic illnesses without requiring a 6-month terminal prognosis or the giving up of curative treatments (Casarett & Abrahm, 2001; National Coalition for Health Care and the Institute for Healthcare Improvement, 2000). These alternatives may be especially appealing to nursing home residents who are not ready to give up curative treatments or who have uncertain prognosis and may help improve access to palliative care for many minority residents. Third, this study suggests that Black residents are significantly more likely to die in a hospital despite the powerful effect of hospice in reducing in-hospital death. Indeed, Black residents were still 80% more likely to die in a hospital than White residents even after we adjusted for the effect of hospice use and other variables. Due to the discontinuity of care that often results, it is generally expected that nursing home residents should avoid transfers to acute inpatient facilities and aggressive interventions as long as this is consistent with residents goals and preferences (Casarett et al., 2005; Zerzan, Stearns, & Hanson, 2000). Previous studies have identified several factors that influence hospitalization and place of death, including individual preferences, quality of life, hospice, facility characteristics, and regional availability of hospital beds (Mitchell et al., 2007; Mor et al., 2005; Pritchard et al., 1998). Several national studies have indicated that, among nursing home residents, institutional factors influence types of endof-life treatments received by residents. These factors include the number of nurse practitioners and physician assistants on staff, profit status, and the proportion of racial minority residents in facilities (Mitchell et al., 2003, 2007; Mor et al., 2005). Whereas cultural preferences of Black residents may influence organizational (i.e., nursing home) practice to promote aggressive end-of-life care (Mitchell et al., 2007), institutional factors such as nursing home staffing availability, profit status (Mitchell et al., 2003, 2007), and the overrepresentation of minority residents in poor-quality nursing facilities (Mor, Zinn, Angelelli, Teno, & Miller, 2004) may also create barriers to using hospice and avoiding hospitalization, especially for Black residents. As many nursing home residents at the end of life have cognitive impairment and may not be able to fully participate in the decision-making process, endof-life care practice among nursing homes may be particularly important in determining types of endof-life care received by residents. A national study of Vol. 48, No. 1,

9 nursing home residents by Mor and colleagues (2004) found that minority residents were overrepresented in poor-quality nursing facilities. If a higher proportion of Black residents than White residents in the current study were residents of poor-quality facilities, it is possible that Black residents experienced barriers created by nursing home facilities. Poorquality nursing homes may not have adequate knowledge of or experience in promoting residentfocused, family-centered end-of-life decision making that facilitates educating about available end-of-life care options and eliciting preferences and participation of residents and families in the process. However, a limitation of the current study is that no data were available on facility characteristics, and thus this study was not able to determine whether nursing home residents received timely, adequate information about hospice and other treatment options and participated in the decision-making process. As a result, the extent to which hospice enrollment and in-hospital death among this dualeligible resident group were influenced by a personal choice, rather than a result of institutional factors, is unclear. Future prospective studies examining multiple individual, facility, and health care market factors will help unravel the complex process of access to hospice and place of death among racially diverse nursing home resident populations. The study had several limitations. It utilized secondary data sources, and, thus, the effect of hospice in reducing the risk of in-hospital death may have been in part due to preferences of nursing home residents who selected hospice care: Hospice nursing home residents may have inherently preferred to avoid end-of-life hospitalization. Due to the limited nature of the data available, we were unable to directly assess the potential effects of cultural norms associated with ethnic groups and personal end-oflife preferences. Similarly, we did not examine potential institutional factors affecting hospice use and place of death, including health care market factors, physician factors, and organizational characteristics of hospice providers and nursing homes. Finally, the study sample of this research was drawn from dual-eligible older nursing home residents who had died in one of three state fiscal years in Florida. Findings from this study may not be generalizable to the national population of dual-eligible nursing home residents. Due to unique characteristics of Florida, especially the state s high level of hospice availability for nursing home residents (Miller & Lima, 2004; Miller & Mor, 2004), the rate of hospice use may have been higher and barriers to access to hospice may have been lower among dual-eligible nursing home residents studied in this research compared to dual-eligible residents in other states. Despite its limitations, this study drew upon a large sample of nursing home residents and was guided by a theoretical framework. Results provide strong evidence for racial differences in hospice use and place of death among dual-eligible nursing home residents. To be most effective, efforts to improve quality of end-of-life care for ethnically/racially diverse nursing home residents should focus on improving access to innovative approaches to providing palliative care and retooling communication about these approaches. Future research testing relationships between individual, cultural, and institutional factors influencing end-of-life decision making and service utilization within theoretical frameworks will help advance researchers theoretical knowledge and develop culturally competent and effective interventions. These interventions will help reduce disparities among diverse nursing home residents at the end of life. References Aday, L. A., & Awe, W. C. (1997). Health service utilization models. In D. S. Gochman (Ed.), Handbook of health behavior research: I. Personal and social determinants (pp ). New York: Plenum Press. Andersen, R. (1968). A behavioral model of families use of health services (Research Series No. 25). Chicago: University of Chicago Center for Health Administration Studies. Andersen, R. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36, Arispe, I. E., Homes, J. S., & Moy, E. (2005). Measurement challenges in developing the National Healthcare Quality Report and the National Healthcare Disparities Report. Medical Care, 43, I17 I23. Casarett, D., & Abrahm, J. (2001). Patients referred to hospice versus a bridge program: Patient characteristics, needs for care, and survival. Journal of Clinical Oncology, 19, Casarett, D. J., Karlawish, J., Marales, K., Crowley, K., Mirsch, T., & Asch, D. A. (2005). Importance of the use of hospice services in nursing homes: A randomized controlled trial. Journal of the American Medical Association, 294, Chen, H. J., Chen, R., & Mehra, S. (2005, June). Racial and ethnic disparities in health service use and unmet health needs among Medicaid recipients. Paper presented to the Florida Agency for Health Care Administration, Tallahassee, FL. Dilworth-Anderson, P., Williams, I. C., & Gibson, B. E. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20-year review ( ). The Gerontologist, 42, Engle, V. F. (1998). Care of the living, care of the dying: Reconceptualizing nursing home care. Journal of the American Geriatrics Society, 46, Enguidanos, S., Yip, J., & Wilber, K. (2005). Ethnic variation in site of death of older adults dually eligible for Medicaid and Medicare. Journal of the American Geriatrics Society, 53, George, L. K. (2002). Research design in end-of-life research: State of science. The Gerontologist, 42(Special Issue III), Gordon, A. K. (1995). Deterrents to access and service for blacks and Hispanics: The Medicare hospice benefit, healthcare utilization, and cultural barriers. Hospice Journal, 10, Gozalo, P. I., & Miller, S. C. (2007). Hospice enrollment and evaluation of its causal effect on hospitalization of dying nursing home patients. Health Services Research, 42, Greiner, K. A., Perera, S., & Ahluwalia, J. S. (2003). Hospice usage by minorities in the last year of life: Results from the National Mortality Followback Survey. Journal of the American Geriatrics Society, 51, Han, B., Remsburg, R. E., & Iwashyna, T. J. (2006). Differences in hospice use between black and white patients during the period 1992 through Medical Care, 44, Hoffmann, D. E., & Tarzian, A. J. (2005). Dying in America: An examination of policies that deter adequate end-of-life care in nursing homes. 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10 Kosloski, K., & Montgomery, R. J. V. (1994). Investigating patterns of service use by families providing care for dependent elders. Journal of Aging and Health, 6, Kosloski, K., Montgomery, R. J. V., & Karner, T. X. (1999). Differences in the perceived need for assistive services by culturally diverse caregivers of persons with dementia. Journal of Applied Gerontology, 18, Kwak, J., & Haley, W. E. (2005). Current research findings on end-of-life decision making among racially/ethnically diverse groups. The Gerontologist, 45, Lackan, N. A., Ostir, G. V., Freeman, J. L., Kuo, Y., Zhang, D. D., & Goodwin, J. S. (2004). Hospice use by Hispanic and non-hispanic white cancer decedents. Health Services Research, 39, Medicare Payment Advisory Commission. (2002). Report to the Congress: Medicare beneficiaries access to hospice. Retrieved November 1, 2004, from _HospiceAccess.pdf Medicare Payment Advisory Commission. (2004). Report to the Congress: New approaches in Medicare. Retrieved November 1, 2004, from Report.pdf Mezey, M., Dubler, N., Mitty, E., & Brody, A. A. (2002). What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process? The Gerontologist, 42, Miller, S. C., Gozalo, P., & Mor, V. (2001). Hospice enrollment and hospitalization of dying nursing home residents. American Journal of Medicine, 111, Miller, S. C., Intrator, O., Gozalo, P., Roy, J., Barber, J., & Mor, V. (2004). Government expenditures at end-of-life short and long-stay nursing home residents: Differences by hospice enrollment. Journal of the American Geriatrics Society, 52, Miller, S. C., & Lima, J. (2004). The Florida model of hospice care: A report for Florida Hospices and Palliative Care, Inc. Center for Gerontology & Health Care Research, Brown University School of Medicine. Miller, S. C., & Mor, V. (2004). The opportunity for collaborative care provision: The presence of nursing home/hospice collaborations in the U.S. states. Journal of Pain and Symptom Management, 28, Miller, S. C., Mor, V., Wu, N., Gozalo, P., & Lapane, K. (2002). Does receipt of hospice care in nursing homes improve the management of pain at the end-of-life? Journal of the American Geriatrics Society, 50, Mitchell, S. L., Teno, J. M., Intrator, O., Feng, Z., & Mor, V. (2007). Decisions to forgo hospitalization in advanced dementia: A nationwide study. Journal of the American Geriatrics Society, 55, Mitchell, S. L., Teno, J. M., Roy, J., Kabumoto, G., & Mor, V. (2003). Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. Journal of the American Medical Association, 290, Mor, V., Papandonatos, G., & Miller, S. C. (2005). End-of-life hospitalization for African American and non-latino white nursing home residents: Variation by race and a facility s racial composition. Journal of Palliative Medicine, 8, Mor, V., Zinn, J., Angelelli, J., Teno, J. M., & Miller, S. C. (2004). Driven to tiers: Socioeconomic and racial disparities in the quality of nursing home care. Milbank Quarterly, 82, National Coalition for Health Care and the Institute for Healthcare Improvement. (2000). Promises to keep: Changing the way we provide care at the end of life. Retrieved January 10, 2007, from materials/studies/eol pdf National Hospice and Palliative Care Organization. (2005). Hospice fact sheet. Arlington, VA: Author. Pritchard, R. S., Fisher, E. S., Teno, J. M., Sharp, S. M., Reding, D. J., Knaus, W. A., et al. (1998). Influence of patient preferences and local health system characteristics on the place of death. Journal of the American Geriatrics Society, 46, Reese, D. J., Ahern, R. E., Nair, S., Schrock, J. D. O., & Warren-Wheat, C. (1999). Hospice access and use by African Americans: Addressing cultural and institutional barriers through participatory action research. Social Work, 44, Schneider, A. (2003, November). Dual eligibles in nursing facilities and Medicare drug coverage. Retrieved August, 30, 2003, from Medicare-Drug-Coverage.pdf#search=%22dual%20eligible%20nursing %20home%20residents%20%22 Teno, J. M., Clarridge, B. R., Casey, V., Welch, L. C., Wetle, T., Shield, R., et al. (2004). Family perspectives on end-of-life care at the last place of care. Journal of the American Medical Association, 291, Teno, J. M., Weitzen, S., Fennell, M. L., & Mor, V. (2001). Dying trajectory in the last year of life: Does cancer trajectory fit other diseases? Journal of Palliative Medicine, 4, Virnig, B. A., Moscovice, I. S., Durham, S. B., & Casey, M. M. (2004). Do rural elders have limited access to Medicare hospice services? Journal of the American Geriatrics Society, 52, Weitzen, S., Teno, J. M., Fennell, M., & Mor, V. (2003). Factors associated with site of death: A national study of where people die. Medical Care, 41, Wolinsky, F. D., & Johnson, R. J. (1991). The use of health services by older adults. Journal of Gerontology: Social Sciences, 46, S345 S357. Zerzan, J., Stearns, S., & Hanson, L. (2000). Access to palliative care and hospice in nursing homes. Journal of the American Medical Association, 284, Received February 3, 2007 Accepted April 17, 2007 Decision Editor: William J. McAuley, PhD Vol. 48, No. 1,

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