Challenges and solutions of conducting dementia clinical trials: A palliative care at home pilot for persons with dementia.

BACKGROUND: Recruitment and retention are common challenges in clinical trials, particularly with older adults and their caregivers who often benefit from palliative care but have significant strain from caregiving. In recent years, there has been an expansion in home-based palliative care programs, especially for patients with dementia. Because these programs often rely on physicians or advanced practice nurses, they are quite costly and may be difficult to staff due to workforce shortages. METHODS: We created a novel program of home-based palliative care for patients with advanced dementia and their families, which centers around a community health worker, a social worker, and a nurse. We report on challenges our trial encountered and corresponding solutions. RESULTS: We enrolled 30 patients and their 30 caregivers in our pilot trial of home-based palliative care. We found two significant barriers to enrollment: (1) the electronic health record was insufficient to determine the severity of patients' dementia; and (2) rates of follow-up survey completion were low, with completion rates at 6 months between 14 and 44%. We created an iterative training process to determine dementia severity from electronic health records and applied person-centered approaches to improve survey completion. CONCLUSIONS: Electronic health records are not set up to include discrete fields for dementia severity, which makes enrollment of older adults with dementia in a clinical trial challenging. The strain of caring for a loved one with advanced dementia may also make participation in health-services research difficult for patients and their families. Novel approaches have the potential to counteract these challenges, improve recruitment and retention, and ultimately improve care for people with dementia and their caregivers.

Potentially Avoidable Hospitalizations Among Historically Marginalized Nursing Home Residents.

Importance: Nursing home (NH) transfers to hospitals are common and have been associated with cognitive decline; approximately 45% of NH hospital transfers are potentially avoidable hospitalizations (PAHs). Objective: To determine PAH incidence for historically marginalized NH residents with severe cognitive impairment compared with non-Hispanic White residents. Design, Setting, and Participants: This cross-sectional study merged 2018 Centers for Medicaid & Medicare Services datasets and LTCFocus, a public dataset on US NH care, for US NH residents aged 65 years and older who had a hospitalization. Analyses were performed from January to May 2022. Exposure: Race and ethnicity of NH residents. Main Outcomes and Measures: Racial and ethnic differences in resident-level annual rates of PAHs were estimated for residents with and without severe cognitive impairment (measured using the Cognitive Function Scale), controlling for resident characteristics, comorbidities, dual eligibility, and time at risk. PAHs were defined as NH hospital transfers that resulted from neglectful NH care or for which NH treatment would have been appropriate. Results: Of 2 098 385 NH residents nationwide included in the study, 7151 (0.3%) were American Indian or Alaska Native, 39 873 (1.9%) were Asian, 229 112 (10.9%) were Black or African American, 99 304 (4.7%) were Hispanic, 2785 (0.1%) were Native Hawaiian or Pacific Islander, 1 713 670 (81.7%) were White, and 6490 (0.3%) were multiracial; 1 355 143 (64.6%) were female; 128 997 (6.2%) were severely cognitively impaired; and the mean (SD) age was 81.8 (8.7) years. PAH incidence rate ratios (IRRs) were significantly greater for residents with severe cognitive impairment compared with those without. In unadjusted analyses comparing historically marginalized residents with severe cognitive impairment vs non-Hispanic White residents with severe cognitive impairment, American Indian or Alaska Native residents had a 49% higher PAH incidence (IRR, 1.49 [95% CI, 1.10-2.01]), Black or African American residents had a 64% higher incidence (IRR, 1.64 [95% CI, 1.48-1.81]), and Hispanic residents had a 45% higher incidence (IRR, 1.45 [95% CI, 1.29-1.62]). Higher incidences persisted for historically marginalized residents with severe cognitive impairment vs non-Hispanic White residents with severe cognitive impairment in adjusted analyses. Asian residents had a 24% higher PAH incidence (IRR, 1.24 [95% CI, 1.06-1.45]), Black or African American residents had a 48% higher incidence (IRR, 1.48 [95% CI, 1.36-1.60]), and Hispanic residents had a 27% higher incidence (IRR, 1.27 [95% CI, 1.16-1.39]). Conclusions and Relevance: In this cross-sectional study of PAHs, compared with non-Hispanic White NH residents, historically marginalized residents had increased PAH incidence. In the presence of severe cognitive impairment, incidence rates increased significantly compared with rates for residents without severe cognitive impairment. These results suggest that identification of residents with severe cognitive impairment and proper NH care may help prevent further cognitive decline by avoiding PAHs.

Timing of Goals of Care Discussions in Nursing Homes: A Systematic Review.

OBJECTIVES: Discussions between health professionals and nursing home (NH) residents or their families about the current or future goals of health care may be associated with better outcomes at the end of life (EOL), such as avoidance of unwanted interventions or death in hospital. The timing of these discussions varies, and it is possible that their influence on EOL outcomes depends on their timing. This study synthesized current evidence concerning the timing of goals of care (GOC) discussions in NHs and its impact on EOL outcomes. DESIGN: Systematic review. SETTING AND PARTICIPANTS: Adult populations in NH settings. METHODS: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. We searched PubMed, Embase, and Cumulative Index of Nursing and Allied Health from January 2000 to September 2022. We included studies that examined timing of GOC discussions in NHs, were peer-reviewed, and published in English. Quality of the studies was assessed using the Newcastle-Ottawa Scale. RESULTS: Screening of 1930 abstracts yielded 149 papers that were evaluated for eligibility. Of the 18 articles, representing 16 distinct studies that met review criteria, 12 evaluated the timing of advance directives. There was variation in the timing of GOC discussions and compared with discussions that occurred within a month of death, earlier discussions (eg, at the time of facility admission) were associated with lower rates of hospitalization at the EOL and lower health care costs. CONCLUSIONS AND IMPLICATIONS: The timing of GOC discussions in NHs varies and evidence suggests that late discussions are associated with poorer EOL outcomes. The benefits of goal-concordant care may be enhanced by earlier and more frequent discussions. Future studies should examine the optimal timing for GOC discussions in the NH population.

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies.

BACKGROUND: Frameworks are the conceptual underpinnings of the study. Both conceptual and theoretical frameworks are often used in palliative and end-of-life care studies to help with study design, guide, and conduct investigations. While an increasing number of investigators have included frameworks in their study, to date, there has not been a comprehensive review of frameworks that were utilized in palliative and end-of-life care research studies. AIM: To summarize conceptual and theoretical frameworks used in palliative and end-of-life care research studies. And to synthesize which of eight domains from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care (fourth edition) each framework belongs to. DESIGN: Systematic review. DATA SOURCES: Four electronic databases (EMBASE, the Cumulative Index to Nursing and Allied Health, PsychINFO, and PubMed) were searched from July 2010 to September 2021. RESULTS: A total 2231 citations were retrieved, of which 44 articles met eligibility. Across primary studies, 33,801 study participants were captured. Twenty-six investigators (59.1%) proposed previously unpublished frameworks. In 10 studies, investigators modified existing frameworks, mainly to overcome inherent limitations. In eight studies, investigators utilized existing frameworks referenced in previously published studies. There were eight orientations identified among 44 frameworks we reviewed (e.g. system, patient, patient-doctor). CONCLUSIONS: We examined palliative and end-of-life research studies to identify and characterize conceptual or theoretical frameworks proposed or utilized. Of 44 frameworks we reviewed, 21 studies (47.7%) were aligned with a Clinical Practice Guideline's single domain, while the rest two or more of eight guidelines in quality palliative care domains.

Structural Racism, Place, and COVID-19: A Narrative Review Describing How We Prepare for an Endemic COVID-19 Future.

Background: Place is a social determinant of health, as recently evidenced by COVID-19. Previous literature surrounding health disparities in the United States often fails to acknowledge the role of structural racism on place-based health disparities for historically marginalized communities (i.e., Black and African American communities, Hispanic/Latinx communities, Indigenous communities [i.e., First Nations, Native American, Alaskan Native, and Native Hawaiian], and Pacific Islanders). This narrative review summarizes the intersection between structural racism and place as contributors to COVID-19 health disparities. Methods: This narrative review accounts for the unique place-based health care experiences influenced by structural racism, including health systems and services and physical environment. We searched online databases for peer-reviewed and governmental sources, published in English between 2000 and 2021, related to place-based U.S. health inequities in historically marginalized communities. We then narrate the link between the historical trajectory of structural racism and current COVID-19 health outcomes for historically marginalized communities. Results: Structural racism has infrequently been named as a contributor to place as a social determinant of health. This narrative review details how place is intricately intertwined with the results of structural racism, focusing on one's access to health systems and services and physical environment, including the outdoor air and drinking water. The role of place, health disparities, and structural racism has been starkly displayed during the COVID-19 pandemic, where historically marginalized communities have been subject to greater rates of COVID-19 incidence and mortality. Conclusion: As COVID-19 becomes endemic, it is crucial to understand how place-based inequities and structural racism contributed to the COVID-19 racial disparities in incidence and mortality. Addressing structurally racist place-based health inequities through anti-racist policy strategies is one way to move the United States toward achieving health equity.

The Role of National Paid Family and Medical Leave Policies in Promoting Health Equity for Older Adults and Their Caregivers.

More than 48 million unpaid family/friend caregivers in the United States provide care to older adults. This unpaid workforce provides essential support for family members or friends who have a serious, long-term illness or disability. However, family caregivers are often under supported, which contributes to negative health, economic, and psychological consequences. Despite the significant contributions of family caregivers, there are limited policy supports aimed at alleviating the hardships of care on this growing community. National paid family and medical leave policy in particular holds substantial potential to alleviate the compounding burdens faced by family caregivers and address systemic inequities that contribute to disproportionately poorer caregiving outcomes among historically marginalized older adults and their caregivers. The purpose of the current article is to provide an overview of the economic burdens and caregiving-related health disparities experienced by Black/African American and Hispanic/Latinx family caregivers and discuss the impact of paid leave policies on the overall health and well-being of older adults. We propose a "Call to Action" for gerontological nurses to work in partnership with transdisciplinary colleagues, stakeholders, and advocates to ensure all family care-givers have access to paid leave. [Journal of Gerontological Nursing, 48(3), 5-10.].

Examining Regional Differences in Nursing Home Palliative Care for Black and Hispanic Residents.

Background: Approximately one-quarter of all deaths in the United States occur in nursing homes (NHs). Palliative care has the potential to improve NH end-of-life care, but more information is needed on the provision of palliative care in NHs serving Black and Hispanic residents. Objective: To determine whether palliative care services in United States NHs are associated with differences in the concentrations of Black and Hispanic residents, respectively, and the impact by region. Design: We conducted a cross-sectional analysis. The outcome was NH palliative care services (measured by an earlier national survey); total scores ranged from 0 to 100 (higher scores indicated more services). Other data included the Minimum Data Set and administrative data. The independent variables were concentration of Black and Hispanic residents (i.e., <3%, 3-10%, >10%), respectively, and models were stratified by region (i.e., Northeast, Midwest, South and West). We compared unadjusted, weighted mean palliative care services by the concentration of Black and Hispanic residents and computed NH-level multivariable linear regressions. Setting/Subjects: Eight hundred sixty-nine (weighted n = 15,020) NHs across the United States. Results: Multivariable analyses showed fewer palliative care services provided in NHs with greater concentrations of Black and Hispanic residents. Fewer palliative care services were reported in NHs in the Northeast, for which >10% of the resident population was Black, and NHs in the West for which >10% was Hispanic versus NHs with <3% of the population being Black and Hispanic (-13.7; p < 0.001 and -9.3; p < 0.05, respectively). Conclusion: We observed differences in NH palliative care by region and with greater concentration of Black and Hispanic residents. Our findings suggest that greater investment in NH palliative care services may be an important strategy to advance health equity in end-of-life care for Black and Hispanic residents.

Comparative Effectiveness of Behavioral Interventions for Cardiovascular Risk Reduction in Latinos: A Systematic Review.

BACKGROUND: Latinos, the fastest growing ethnic minority group in the United States, are at a high risk for cardiovascular disease (CVD). However, little is known about effective strategies to reduce CVD risk in this population. OBJECTIVE: The aim of this study was to systematically review and synthesize evidence from randomized controlled trials that examined the effectiveness of behavioral interventions to reduce CVD risk in Latinos living in the United States. METHODS: Four electronic databases were searched for relevant peer-reviewed English- and Spanish-language articles published between January 1, 2000, and December 31, 2019. Four reviewers independently completed article screening, data abstraction, and quality appraisal. At least 2 reviewers completed data abstraction and quality appraisal for each article, and a third reviewer was assigned to settle disagreements. Data on study characteristics and outcomes were abstracted. RESULTS: We retrieved 1939 articles. After applying inclusion/exclusion criteria, 17 articles were included. Most interventions were led by community health workers (n = 10); 2 family-based interventions were identified. None of the included studies was nurse led. Behavioral factors were assessed across all included studies, whereas only 4 studies reported on psychosocial outcomes. Improvements were observed in dietary habits and psychosocial outcomes. Findings for physical activity and biological outcomes were mixed. We identified no differences in outcomes based on intervention modalities used or the role of those who led the interventions. CONCLUSION: Existing evidence is mixed. Future research should assess the effectiveness of understudied treatment modalities (including nurse-led, mobile health, and family-based interventions) in reducing CVD risk in Latinos.

Nursing Home Antibiotic Stewardship Policy and Antibiotics Use: 2013-2017.

OBJECTIVES: Reducing inappropriate nursing home (NH) antibiotic usage by implementing stewardship programs is a national priority. Our aim is to evaluate the influence of antibiotic stewardship programs on antibiotic use rates in NHs over time. DESIGN: Retrospective, repeated cross-sectional analysis. SETTING AND PARTICIPANTS: Long-term residents not receiving hospice care in freestanding NHs that participated in 1 or both surveys in 2013 and 2017. METHODS: Survey data were merged with the Minimum Data Set and the Certification and Survey Provider Enhanced Reporting data. Our outcome was a binary indicator for antibiotic use. The main predictor was the NH antibiotic stewardship policy intensity. Using multivariate linear regression models adjusting for resident and facility characteristics that differed between the 2 years, we calculated antibiotic use rates in 2013 and 2017 for all residents, those with Alzheimer's disease, and those with any infection including urinary tract infections (UTIs). RESULTS: Our sample included 317,003 resident assessments from 2013 and 267,537 assessments from 2017, residing in 953 and 872 NHs, respectively. NH antibiotic stewardship policy intensity increased from 2013 to 2017 (P < .01) and among all NH residents, including those with Alzheimer's disease, antibiotic use rate decreased (P < .05), with 45% of the decline attributable to strengthening stewardship programs. For most residents, policy intensity was associated with decreased usage in residents with UTI. However, among Alzheimer's disease residents with a UTI, this association did not persist. CONCLUSIONS AND IMPLICATIONS: Although there was a decrease in antibiotic use in 2017, more time is needed to see the full impact of antibiotic stewardship policy into practice. Adjustments to programs that directly address barriers to implementation and appropriate UTI antibiotic use for residents with Alzheimer's disease are necessary to continue strengthening NH antibiotic stewardship and improve care.

Differences in Care Provided in Urban and Rural Nursing Homes in the United States: Literature Review.

Despite evidence acknowledging disadvantages in care provided to older adults in rural nursing homes (NHs) in the United States, since 2010, no literature review has focused on differences in care provided in urban versus rural NHs. In the current study, we examined these differences by searching U.S. English-language peer-reviewed articles published after 2010 on differences in care quality in urban and rural NHs. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and used the Newcastle-Ottawa Scale for quality appraisal. We conducted full-text abstraction of 56 (of 286) articles, identifying 10 relevant studies. Metric specification of urban/rural location varied, and care quality measures were wide-ranging, making it difficult to interpret evidence. Limited evidence supported that rural NHs, compared to urban NHs, provided sparse mental health support and limited access to hospice care after controlling for facility and resident characteristics. Our review highlights the need for more research examining differences in quality of care between urban and rural NHs and raises several issues in current research examining urban/rural NH differences where future work is needed. [Journal of Gerontological Nursing, 47(12), 48-56.].

Community-Based Advance Care Planning Interventions for Minority Older Adults: A Systematic Review.

Racial/ethnic minority older adults in the United States often experience access, language, and cultural barriers to advance care planning. For the current study, a systematic review was conducted to summarize and appraise the current science on community-based interventions aimed at increasing advance care planning in racial/ethnic minority older adults. Five articles met the inclusion criteria, which represented four unique interventions in Asian American (n = 2) and Hispanic (n = 2) communities. Two interventions were nurse-led workshops and two were one-onone social worker-led sessions. Outcomes measured were intention to or completion of advance directive or advance care planning discussion; and improvement in advance directive knowledge, beliefs, attitudes, and comfort related to advance care planning. Interventions increased intention to or completion of advance directives and improved advance care planning knowledge, beliefs, and attitudes. Results were inconclusive regarding promoting advance care planning discussions. Further research is needed to address the diverse needs of racial/ethnic minority older adults and barriers to advance care planning. [Journal of Gerontological Nursing, 47(5), 26-36.].

Assessment of Coronavirus Disease 2019 Infection and Mortality Rates Among Nursing Homes With Different Proportions of Black Residents.

OBJECTIVE: Coronavirus disease 2019 (COVID-19) has disproportionately impacted nursing homes (NHs) with large shares of Black residents. We examined the associations between the proportion of Black residents in NHs and COVID-19 infections and deaths, accounting for structural bias (operationalized as county-level factors) and stratifying by urbanicity/rurality. DESIGN: This was a cross-sectional observational cohort study using publicly available data from the LTCfocus, Centers for Disease Control and Prevention Long-Term Care Facility COVID-19 Module, and the NYTimes county-level COVID-19 database. Four multivariable linear regression models omitting and including facility characteristics, COVID-19 burden, and county-level fixed effects were estimated. SETTING AND PARTICIPANTS: In total, 11,587 US NHs that reported data on COVID-19 to the Centers for Disease Control and Prevention and had data in LTCfocus and NYTimes from January 20, 2020 through July 19, 2020. MEASURES: Proportion of Black residents in NHs (exposure); COVID-19 infections and deaths (main outcomes). RESULTS: The proportion of Black residents in NHs were as follows: none= 3639 (31.4%), <20% = 1020 (8.8%), 20%-49.9% = 1586 (13.7%), ≥50% = 681 (5.9%), not reported = 4661 (40.2%). NHs with any Black residents showed significantly more COVID-19 infections and deaths than NHs with no Black residents. There were 13.6 percentage points more infections and 3.5 percentage points more deaths in NHs with ≥50% Black residents than in NHs with no Black residents (P < .001). Although facility characteristics explained some of the differences found in multivariable analyses, county-level factors and rurality explained more of the differences. CONCLUSIONS AND IMPLICATIONS: It is likely that attributes of place, such as resources, services, and providers, important to equitable care and health outcomes are not readily available to counties where NHs have greater proportions of Black residents. Structural bias may underlie these inequities. It is imperative that support be provided to NHs that serve greater proportions of Black residents while considering the rurality of the NH setting.

Racial/Ethnic Disparities in Nursing Home End-of-Life Care: A Systematic Review.

OBJECTIVE: Health disparities are pervasive in nursing homes (NHs), but disparities in NH end-of-life (EOL) care (ie, hospital transfers, place of death, hospice use, palliative care, advance care planning) have not been comprehensively synthesized. We aim to identify differences in NH EOL care for racial/ethnic minority residents. DESIGN: A systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and registered in PROSPERO (CRD42020181792). SETTING AND PARTICIPANTS: Older NH residents who were terminally ill or approaching the EOL, including racial/ethnic minority NH residents. METHODS: Three electronic databases were searched from 2010 to May 2020. Quality was assessed using the Newcastle-Ottawa Scale. RESULTS: Eighteen articles were included, most (n = 16) were good quality and most (n = 15) used data through 2010. Studies varied in definitions and grouping of racial/ethnic minority residents. Four outcomes were identified: advance care planning (n = 10), hospice (n = 8), EOL hospitalizations (n = 6), and pain management (n = 1). Differences in EOL care were most apparent among NHs with higher proportions of Black residents. Racial/ethnic minority residents were less likely to complete advance directives. Although hospice use was mixed, Black residents were consistently less likely to use hospice before death. Hispanic and Black residents were more likely to experience an EOL hospitalization compared with non-Hispanic White residents. Racial/ethnic minority residents experienced worse pain and symptom management at the EOL; however, no articles studied specifics of palliative care (eg, spiritual care). CONCLUSIONS AND IMPLICATIONS: This review identified NH health disparities in advance care planning, EOL hospitalizations, and pain management for racial/ethnic minority residents. Research is needed that uses recent data, reflective of current NH demographic trends. To help reduce EOL disparities, language services and cultural competency training for staff should be available in NHs with higher proportions of racial/ethnic minorities.

The Role of Regional and State Initiatives in Nursing Home Advance Care Planning Policies.

OBJECTIVE: Antibiotic use at the end of life (EoL) may introduce physiological as well as psychological stress and be incongruent with patients' goals of care. Advance care planning (ACP) related to antibiotic use at the EoL helps improve goal-concordant care. Many nursing home (NH) residents are seriously ill. Therefore, we aimed to examine whether state and regional ACP initiatives play a role in the presence of "do not administer antibiotics" orders for NH residents at the EoL. METHODS: We surveyed a random, representative national sample of 810 U.S. NHs (weighted n = 13,983). The NH survey included items on "do not administer antibiotics" orders in place and participation in infection prevention collaboratives. The survey was linked to state Physician Orders for Life-Sustaining Treatment (POLST) adoption status and resident, facility, and county characteristics data. We conducted multivariable regression models with state fixed effects, stratified by state POLST designation. RESULTS: NHs in mature POLST states reported higher rates of "do not administer antibiotics" orders compared to developing POLST states (10.1% vs. 4.6%, respectively, p = 0.004). In mature POLST states, participation in regional collaboratives and smaller NH facilities (<100 beds) were associated with having "do not administer antibiotics" orders for seriously ill residents (ß = 0.11, p = 0.006 and ß = 0.12, p = 0.003, respectively). DISCUSSION: NHs in states with mature POLST adoption that participated in infection control collaboratives were more likely to have "do not administer antibiotics" orders. State ACP initiatives combined with regional antibiotic stewardship initiatives may improve inappropriate antibiotic use at the EoL for NH residents.

Palliative care and infection management at end of life in nursing homes: A descriptive survey.

BACKGROUND: Infections are common occurrences at end of life that are associated with high rates of morbidity and mortality among frail elderly individuals. The problem of infections in nursing homes has led to a subsequent overuse and misuse of antibiotics in this already-frail population. Improving palliative care in nursing homes has been proposed as a key strategy to reduce the use of antibiotics. AIM: The aim of this study was to describe the current status of how nursing homes integrates palliative care and infection management at end of life across the nation. DESIGN: This is a cross-sectional survey of nationally representative US nursing homes. SETTING/PARTICIPANTS: Between November 2017 and October 2018, a survey was conducted with a nationally representative random sample of nursing homes and 892 surveys were completed (49% response rate). The weighted study sample represented 15,381 nursing homes across the nation. RESULTS: Most nursing homes engaged in care plan documentation on what is important to residents (90.43%) and discussed spiritual needs of terminally ill residents (89.50%). In the event of aspiration pneumonia in terminally ill residents, 59.43% of nursing homes responded that resident would be transferred to the hospital. In suspected urinary tract infection among terminally ill residents, 66.62% of nursing homes responded that the resident will be treated with antibiotics. CONCLUSION: The study found wide variations in nursing home palliative care practices, particularly for timing of end-of-life care discussions, and suboptimal care reported for antibiotic usage. Further education for nursing home staff on appropriate antibiotic usage and best practices to integrate infection management in palliative care at the end of life is needed.