A randomized controlled trial of a novel home-based palliative care program: A report of a trial that could not be completed.

BACKGROUND: In response to a growing need for accessible, efficient, and effective palliative care services, we designed, implemented, and evaluated a novel palliative care at home (PC@H) model for people with serious illness that is centered around a community health worker, a registered nurse, and a social worker, with an advanced practice nurse and a physician for support. Our objectives were to measure the impact of receipt of PC@H on patient symptoms, quality of life, and healthcare utilization and costs. METHODS: We enrolled 136 patients with serious illness in this parallel, randomized controlled trial. Our primary outcome was change in symptom burden at 6 weeks. Secondary outcomes included change in symptom burden at 3 months, change in quality of life at 6 weeks and 3 months, estimated using a group t-test. In an exploratory aim, we examined the impact of PC@H on healthcare utilization and cost using a generalized linear model. RESULTS: PC@H resulted in a greater improvement in patient symptoms at 6 weeks (1.30 score improvement, n = 37) and 3 months (3.14 score improvement, n = 21) compared with controls. There were no differences in healthcare utilization and costs between the two groups. Unfortunately, due to the COVID-19 pandemic and a loss of funding, the trial was not able to be completed as originally intended. CONCLUSIONS: A palliative care at home model that leverages community health workers, registered nurses, and social workers as the primary deliverers of care may result in improved patient symptoms and quality of life compared with standard care. We did not demonstrate significant differences in healthcare utilization and cost associated with receipt of PC@H, likely due to inability to reach the intended sample size and insufficient statistical power, due to elements beyond the investigators' control such as the COVID-19 public health emergency and changes in grant funding.

The Prevalence of Cognitive Impairment Among Medicare Beneficiaries Who Use Outpatient Physical Therapy.

OBJECTIVE: The objective of this study was to estimate the prevalence of cognitive impairment (including cognitive impairment no dementia [CIND] and dementia) among Medicare fee-for-service beneficiaries who used outpatient physical therapy and to estimate the prevalence of cognitive impairment by measures that are relevant to rehabilitation practice. METHODS: This cross-sectional analysis included 730 Medicare fee-for-service beneficiaries in the 2016 wave of the Health and Retirement Study with claims for outpatient physical therapy. Cognitive status, our primary variable of interest, was categorized as normal, CIND, or dementia using a validated approach, and population prevalence of cognitive impairment (CIND and dementia) was estimated by sociodemographic variables and Charlson comorbidity index score. Age-, gender- (man/woman), race-/ethnicity-adjusted population prevalence of CIND and dementia were also calculated for walking difficulty severity, presence of significant pain, self-reported fall history, moderate-vigorous physical activity (MVPA) ≤1×/week, and sleep disturbance frequency using multinomial logistic regression. RESULTS: Among Medicare beneficiaries with outpatient physical therapist claims, the prevalence of any cognitive impairment was 20.3% (CIND:15.2%, dementia:5.1%). Cognitive impairment was more prevalent among those who were older, Black, had lower education attainment, or higher Charlson comorbidity index scores. The adjusted population prevalence of cognitive impairment among those who reported difficulty walking across the room was 29.8%, difficulty walking 1 block was 25.9%, difficulty walking several blocks was 20.8%, and no difficulty walking was 16.3%. Additionally, prevalence of cognitive impairment among those with MVPA ≤1×/week was 27.1% and MVPA >1×/week was 14.1%. Cognitive impairment prevalence did not vary by significant pain, self-reported fall history, or sleep disturbance. CONCLUSION: One in 5 older adults who use outpatient physical therapist services have cognitive impairment. Furthermore, cognitive impairment is more common in older physical therapist patients who report worse physical function and less physical activity. IMPACT: Physical therapists should consider cognitive screening for vulnerable older adults to inform tailoring of clinical practice toward a patient's ability to remember and process rehabilitation recommendations.

Health care utilization and costs in the years preceding dementia identification.

INTRODUCTION: There is evidence that health care utilization increases after incident dementia, particularly after dementia diagnosis and toward the end of life; however, less is known about utilization in the years before dementia identification. METHODS: In this retrospective cohort study we obtained data on n = 5547 beneficiaries from the Health and Retirement Study (HRS)-Medicare linked sample (n = 1241 with and n = 4306 without dementia) to compare longitudinal trends in health care costs and utilization in the 6 years preceding dementia identification relative to a confounder-balanced reference group without dementia. RESULTS: We found that persons with dementia had a greater prevalence of outpatient emergency department (ED), inpatient hospital, skilled nursing, and home health use, and total health care costs in the years preceding dementia identification compared to their similar counterparts without dementia across a comparable timespan in later life. CONCLUSIONS: This study provides evidence to suggest greater healthcare burden may exist well before clinical manifestation and identification of dementia. HIGHLIGHTS: Several studies have documented the tremendous healthcare-related costs of living with dementia, particularly toward the end of life. Dementia is a progressive neurodegenerative disease, which, for some, includes a prolonged pre-clinical phase. However, health services research to date has seldom considered the time before incident dementia. This study documents that health care utilization and costs are significantly elevated in the years before incident dementia relative to a demographically-similar comparison group without dementia.

Declines in Wealth Among US Older Adults at Risk of Dementia.

This case-control study uses Health and Retirement Study data to examine the trajectories of wealth among US older adults at risk of dementia.

Heart failure with comorbid dementia: Association with clinical characteristics and outcomes.

BACKGROUND: Heart failure (HF) and dementia both have profound effects on function and mortality in older persons. However, we have limited knowledge about the impact of co-occurring HF and dementia. Our goal was to understand how often persons with HF have dementia and the impact of their co-occurrence. METHODS: Retrospective analysis of participants (age > 65) in the 2015 wave of the nationally representative Health and Aging Trends Study (NHATS) with linkage to Medicare claims. 912 participants with HF (45% older than 80, 51% women) using Medicare claims. We used the validated NHATS dementia algorithm to identify those with probable dementia. Outcomes of interest included the need for help with activities of daily living (ADLs) and instrumental activities of daily living (IADLs) at baseline, functional decline, hospitalization over 1 year, and mortality over 2-years. Baseline functional status, functional decline, and hospitalization were compared using adjusted logistic regression, mortality was analyzed using adjusted Cox regression models adjusted for demographics, socio-economic status, baseline health, and baseline functional status. RESULTS: 200 (21%) of the participants with HF also had dementia. For each I/ADL, patients with both HF and dementia were more likely to need help than those with HF without dementia. 71.8% of participants with HF and dementia needed help with medications versus 16.6% with HF without dementia (p < 0.001). Having HF and dementia was associated with an increased risk of requiring help with additional ADLs after one year (aOR = 2.69, 95% CI 1.53, 4.73). Participants with HF and dementia had an increased risk of being hospitalized within one year (aOR = 2.02 95% CI 1.16, 3.54), or dying within two years (aHR = 1.52 95% CI 1.03, 2.26). CONCLUSIONS: One-fifth of persons over age 65 with HF also have comorbid dementia. Co-occurring HF and dementia markedly increase functional impairment and subsequent ADL decline, hospitalization, and death. These results highlight the need for physician awareness for signs of dementia, and appropriate adjustments in the management of HF.

Paid Care for People with Functional Impairment and Serious Illness: Results from the Health and Retirement Study.

BACKGROUND: Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life). OBJECTIVE: To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status. DESIGN: Retrospective cohort study. PARTICIPANTS: Community-dwelling participants ≥ 65 years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521). MAIN MEASURES: Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks. KEY RESULTS: While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40 h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present. CONCLUSIONS: Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum.

Caring for aging parents in the last years of life.

BACKGROUND: Adult children provide a large portion of end-of-life caregiving for older adults and make up the majority of caregivers for adults with dementia. Yet research has been limited to the hours of care that primary caregivers provide, neglecting the other ways adult children provide caregiving support. This study aims to describe the caregiving support adult children provide to their parents at the end of life and characterize differences by race and ethnicity and dementia status. METHODS: We conducted a retrospective study using survey responses from the Health and Retirement Study between 2002 and 2018. The sample population (n = 8040) included decedents aged 65 with at least one living adult child at their time of death. Caregiving support was defined as providing financial support, providing help with basic or instrumental activities of daily living (ADLs or IADLs), or coresiding with the care recipient. Respondents were stratified by self-identified race and ethnicity as Hispanic, non-Hispanic White, or non-Hispanic Black. Respondents were further stratified by dementia and marital status. RESULTS: Black and Hispanic respondents without dementia were more likely to report receiving financial help from (28.0% and 25.9%) or coresiding with their adult children (38.9% and 49.7%) compared to White respondents (15.0% receiving financial help and 23.3% coresiding) (p < 0.05). Among respondents with dementia, 47.1% of both Black and Hispanic respondents reported coresiding with their adult children, compared to only 24.6% of White respondents (p < 0.05). Notably, married Black and Hispanic respondents reported significantly higher rates of all support types compared to married White respondents (p < 0.05). CONCLUSIONS: The majority of older adults at the end of life receive some form of care and support from their adult children, with Black and Hispanic older adults receiving particularly high rates of care and support from their adult children regardless of dementia or marital status.

Complex Care Needs at the End of Life for Seriously Ill Adults With Multiple Chronic Conditions.

Understanding the complex care needs of seriously ill adults with multiple chronic conditions with and without cancer is critical for the delivery of high-quality serious illness and palliative care at the end of life. The objective of this secondary data analysis of a multisite randomized clinical trial in palliative care was to elucidate the clinical profile and complex care needs of seriously ill adults with multiple chronic conditions and to highlight key differences among those with and without cancer at the end of life. Of the 213 (74.2%) older adults who met criteria for multiple chronic conditions (eg, 2 or more chronic conditions requiring regular care with limitations of daily living), 49% had a diagnosis of cancer. Hospice enrollment was operationalized as an indicator for severity of illness and allowed for the capture of complex care needs of those deemed to be nearing the end of life. Individuals with cancer had complex symptomatology with a higher prevalence of nausea, drowsiness, and poor appetite and end of life and lower hospice enrollment. Individuals with multiple chronic conditions without cancer had lower functional status, greater number of medications, and higher hospice enrollment. The care of seriously ill older adults with multiple chronic conditions requires tailored approaches to improve outcomes and quality of care across health care settings, particularly at the end of life.

The heterogeneity of the homebound: A latent class analysis of a national sample of homebound older adults.

BACKGROUND: Homebound status is a final common pathway for people with a variety of diseases and conditions. There are 7 million homebound older adults in the United States. Despite concerns regarding their high healthcare costs and utilization and limited access to care, the unique subsets within the homebound population are understudied. Better understanding of distinct homebound groups may enable more targeted and tailored approaches to care delivery. Therefore, in a nationally representative sample of homebound older adults we used latent class analysis (LCA) to examine distinct homebound subgroups based on clinical and sociodemographic characteristics. MATERIALS AND METHODS: Using data from the National Health and Aging Trends Study (NHATS) 2011-2019, we identified 901 newly homebound persons (defined as never/rarely leaving home or leaving home only with assistance and/or difficulty). Sociodemographic, caregiving context, health and function, and geographic covariates were derived from NHATS via self-report. LCA was used to identify the existence of distinct subgroups within the homebound population. Indices of model fit were compared for models testing 1-5 latent classes. Association between latent class membership and 1 year mortality was examined using a logistic regression. RESULTS: We identified four classes of homebound individuals differentiated by their health, function, sociodemographic characteristics, and caregiving context: (i) Resource constrained (n = 264); (ii) Multimorbid/high symptom burden (n = 216); (iii) Dementia/functionally impaired (n = 307); (iv) Older/assisted living (n = 114). One year mortality was highest among the older/assisted living subgroup (32.4%) and lowest among the resource constrained (8.2%). CONCLUSIONS: This study identifies subgroups of homebound older adults characterized by distinct sociodemographic and clinical characteristics. These findings will support policymakers, payers, and providers in targeting and tailoring care to the needs of this growing population.

Examining annual transitions in healthcare spending among U.S. medicare beneficiaries using multistate Markov models: Analysis of medicare current beneficiary survey data, 2003-2019.

Many studies have examined factors associated with individuals of high or low healthcare spending in a given year. However, few have studied how healthcare spending changes over multiple years and which factors are associated with the changes. In this study, we examined the dynamic patterns of healthcare spending over a three-year period, among a nationally representative cohort of Medicare beneficiaries in the U.S. and identified factors associated with these patterns. We extracted data for 30,729 participants from the national Medicare Current Beneficiary Survey (MCBS), for the period 2003-2019. Using multistate Markov (MSM) models, we estimated the probabilities of year-to-year transitions in healthcare spending categorized as three states (low (L), medium (M) and high (H)), or to the terminal state, death. The participants, 13,554 (44.1%), 13,715 (44.6%) and 3,460 (11.3%) were in the low, medium and high spending states at baseline, respectively. The majority of participants remained in the same spending category from one year to the next (L-to-L: 76.8%; M-to-M: 71.7%; H-to-H: 56.6 %). Transitions from the low to high spending state were significantly associated with older age (75-84, ≥85 years), residing in a long-term care facility, greater assistance with activities of daily living, enrollment in fee-for-service Medicare, not receiving a flu shot, and presence of specific medical conditions, including cancer, dementia, and heart disease. Using data from a large population-based longitudinal survey, we have demonstrated that MSM modelling is a flexible framework and useful tool for examining changes in healthcare spending over time.

The Trauma Dyad: The Role of Informal Caregivers for Older Adults After Traumatic Injury.

OBJECTIVE: To investigate the association between higher injury severity and increased informal caregiving received by injured older adults. SUMMARY OF BACKGROUND DATA: Injured older adults experience high rates of functional decline and disability after hospitalization. Little is known about the scope of caregiving received post-discharge, particularly from informal caregivers such as family. METHODS: We used the National Health and Aging Trends Study 2011 to 2018 linked to Medicare claims to identify adults ≥65 with hospital admission for traumatic injury and a National Health and Aging Trends Study interview within 12 months pre- and post-trauma. Injury severity was assessed using the injury severity score (ISS, low 0-9; moderate 10-15; severe 16-75). Patients reported the types and hours of formal and informal help received and any unmet care needs. Multi variable logistic regression models examined the association between ISS and increase in informal caregiving hours after discharge. RESULTS: We identified 430 trauma patients. Most were female (67.7%), non-Hispanic White (83.4%) and half were frail. The most common mechanism of injury was fall (80.8%) and median injury severity was low (ISS = 9). Those reporting receiving help with any activity increased post-trauma (49.0% to 72.4%, P < 0.01), and unmet needs nearly doubled (22.8% to 43.0%, P < 0.01). Patients had a median of 2 caregivers and most (75.6%) were informal, often family members. Median weekly hours of care received pre- versus post-injury increased from 8 to 14 (P < 0.01). ISS did not independently predict increase in caregiving hours; pre-trauma frailty predicted an increase in hours ≥8 per week. CONCLUSIONS: Injured older adults reported high baseline care needs which increased significantly after hospital discharge and were mostly met by informal caregivers. Injury was associated with increased need for assistance and unmet needs regardless of injury severity. These results can help set expectations for caregivers and facilitate post-acute care transitions.

Prevalence of unpaid caregiving, pain, and depression in older seriously ill patients undergoing elective surgery.

INTRODUCTION: Serious illness is a life-limiting condition negatively impacting daily function, quality of life, or excessively straining caregivers. Over 1 million older seriously ill adults undergo major surgery annually, and national guidelines recommend that palliative care be available to all seriously ill patients. However, the palliative care needs of elective surgical patients are incompletely described. Understanding baseline caregiving needs and symptom burden among seriously ill older surgical patients could inform interventions to improve outcomes. METHODS: Using Health and Retirement Study data (2008-2018) linked to Medicare claims, we identified patients ≥66 years who met an established serious illness definition from administrative data and underwent major elective surgery using Agency for Healthcare Research and Quality (AHRQ) criteria. Descriptive analyses were performed for preoperative patient characteristics, including: unpaid caregiving (no or yes); pain (none/mild or moderate/severe); and depression (no, CES-D < 3, or yes, CES-D ≥ 3). Multivariable regression was performed to examine the association between unpaid caregiving, pain, depression, and in-hospital outcomes, including hospital days (days admitted between discharge date and one-year post-discharge), in-hospital complications (no or yes), and discharge destination (home or non-home). RESULTS: Of the 1343 patients, 55.0% were female and 81.6% were non-Hispanic White. Mean age was 78.0 (SD 6.8); 86.9% had ≥2 comorbidities. Before admission, 27.3% of patients received unpaid caregiving. Pre-admission pain and depression were 42.6% and 32.8%, respectively. Baseline depression was significantly associated with non-home discharge (OR 1.6, 95% CI 1.2-2.1, p = 0.003), while baseline pain and unpaid caregiving needs were not associated with in-hospital or post-acute outcomes in multivariable analysis. CONCLUSIONS: Prior to elective surgery, older adults with serious illnesses have high unpaid caregiving needs and a prevalence of pain and depression. Baseline depression alone was associated with discharge destinations. These findings highlight opportunities for targeted palliative care interventions throughout the surgical encounter.

The burden of pre-admission pain, depression, and caregiving on palliative care needs for seriously ill trauma patients.

INTRODUCTION: Increasing numbers of individuals admitted to hospitals for trauma are older adults, many of whom also have underlying serious illnesses. Older adults with serious illness benefit from palliative care, but the palliative care needs of seriously ill older adults with trauma have not been elucidated. We hypothesize that older adults with serious illness have a high prevalence of pain, depression, and unpaid caregiving hours before trauma admission. METHODS: Using Health and Retirement Study data (2008-2018) linked to Medicare claims, we identified patients 66 years or older who met an established definition of serious illness in surgery and were admitted with trauma. Descriptive analyses were performed for baseline patient characteristics, pre-admission pain (dichotomized as none/mild vs. moderate/severe), depression (dichotomized as no, Center for Epidemiologic Studies Depression scale [CES-D] < 3 vs. yes, CES-D ≥ 3), and unpaid caregiving hours (dichotomized as low (<30 h/month), high (≥30 h/month)). RESULTS: We identified 1741 patients, 67.4% were female and 86.8% White. Mean age was 83 (SD 7.5), and 60.3% had ≥4 comorbidities. The majority (62.9%) were admitted due to falls, 33.5% had isolated hip fracture. The prevalence of baseline moderate/severe pain and depression were 38.1% and 42.6%, respectively. Among the cohort, 42.2% had unpaid caregiving, of those 27.7% had ≥30 h/week of unpaid caregiving hours. CONCLUSIONS: Prior to trauma admission, older adults with serious illness have a high prevalence of pain, depression, and unpaid caregiving hours. These findings may inform targeted palliative care interventions to reduce symptom burden and post-discharge healthcare utilization.

Multiple Chronic Conditions among Seriously Ill Adults Receiving Palliative Care.

The objective of this study was to characterize multiple chronic conditions (MCCs) among seriously ill adults receiving palliative care at the end of life. A latent class analysis was conducted to identify latent subgroups of seriously ill older adults based on a baseline Charlson comorbidity index (CCI) measurement, a measure of comorbidity burden, and mortality risk. The three latent subgroups were: (1) low to moderate CCI with MCC, (2) high CCI with MCC, and (3) high CCI and metastatic cancer. The "low to moderate CCI and MCC" subgroup included older adults with chronic obstructive pulmonary disease (COPD), cardiovascular disease, congestive heart failure, myocardial infarction, dementia, diabetes, and lymphoma. A "high CCI and MCC" subgroup included individuals with severe illness including liver or renal disease among other MCCs. A "high CCI and metastatic cancer" included all participants with metastatic cancer. This study sheds light on the MCC profile of seriously ill adults receiving palliative care.

The devil's in the details: Variation in estimates of late-life activity limitations across national cohort studies.

BACKGROUND: Assessing activity limitations is central to aging research. However, assessments of activity limitations vary, and this may have implications for the populations identified. We aim to compare measures of activities of daily living (ADLs) and their resulting prevalence and mortality across three nationally-representative cohort studies: the National Health and Aging Trends Study (NHATS), the Health and Retirement Survey (HRS), and the Medicare Current Beneficiary Survey (MCBS). METHODS: We compared the phrasing and context of questions around help and difficulty with six self-care activities: eating, bathing, toileting, dressing, walking inside, and transferring. We then compared the prevalence and 1-year mortality for difficulty and help with eating and dressing. RESULTS: NHATS, HRS, and MCBS varied widely in phrasing and framing of questions around activity limitations, impacting the proportion of the population found to experience difficulty or receive help. For example, in NHATS 12.4% [95% confidence interval (CI) 11.5%-13.4%] of the cohort received help with dressing, while in HRS this figure was 6.4% [95% CI 5.7%-7.2%] and MCBS 5.3% [95% CI 4.7%-5.8%]. When combined with variation in sampling frame and survey approach of each survey, such differences resulted in large variation in estimates of the older population of older adults with ADL disability. CONCLUSIONS: In order to take late-life activity limitations seriously, we must clearly define the measures we use. Further, researchers and clinicians seeking to understand the experience of older adults with activity limitations should be careful to interpret findings in light of the framing of the question asked.

Functional and clinical needs of older hospice enrollees with coexisting dementia.

BACKGROUND: The Medicare Hospice Benefit increasingly serves people dying with dementia. We sought to understand characteristics, hospice use patterns, and last-month-of-life care quality ratings among hospice enrollees with dementia coexisting with another terminal illness as compared to enrollees with a principal hospice diagnosis of dementia, and enrollees with no dementia. METHODS: We conducted a pooled cross-sectional study among decedent Medicare beneficiaries age 70+ using longitudinal data from the National Health and Aging Trends Study (NHATS) (last interview before death; after-death proxy interview) linked to Medicare hospice claims (2011-2017). We used unadjusted and adjusted regression analyses to compare characteristics of hospice enrollees with coexisting dementia to two groups: (1) enrollees with a principal dementia diagnosis, and (2) enrollees with no dementia. RESULTS: Among 1105 decedent hospice enrollees age 70+, 40% had coexisting dementia, 16% had a principal diagnosis of dementia, and 44% had no dementia. In adjusted analyses, enrollees with coexisting dementia had high rates of needing help with 3-6 activities of daily living, similar to enrollees with principal dementia (62% vs. 67%). Enrollees with coexisting dementia had high clinical needs, similar to those with no dementia, for example, 63% versus 61% had bothersome pain. Care quality was worse for enrollees with coexisting dementia versus principal dementia (e.g., 61% vs. 79% had anxiety/sadness managed) and similar to those with no dementia. Enrollees with coexisting dementia had similar hospice use patterns as those with principal diagnoses and higher rates of problematic use patterns compared to those with no dementia (e.g., 16% vs. 10% live disenrollment, p = 0.004). CONCLUSIONS: People with coexisting dementia have functional needs comparable to enrollees with principal diagnoses of dementia, and clinical needs comparable to enrollees with no dementia. Changes to hospice care models and policy may be needed to ensure appropriate dementia care.

Role of Home Health for Community-Dwelling Older Adults Near the End of Life: A Resource Beyond Hospice?

Background: Medicare home health could be leveraged to care for those near the end of life (EOL), especially for those who cannot access nor desire the Medicare hospice benefit. It is unknown what role home health currently has either preceding or as an alternative to hospice use. Objective: The aim of this study is to compare populations served and visit patterns of Medicare beneficiaries receiving home health/hospice/both near the EOL. Design: Nationally representative cohort study of National Health and Aging Trends Study (NHATS) respondents. Setting/Subjects: A total of 1,057 U.S. decedents in NHATS from 2012 to 2017 with linked Medicare claims were included in this study. Measurements: Measurements included the proportion of decedents who received home health/hospice/both/neither (yes/no) in the last six months of life (EOL) and mean number of visits by discipline (nurse/therapist [physical/occupational speech-language pathologist]/social worker/home health aide) per 30 eligible days at home for home health/hospice/both at the EOL. The primary independent variable was the clinician discipline providing services (nurse/therapist/social worker/aide). Results: In our sample, 19.9% received home health only, 25.8% hospice only, 18.8% both, and 35.6% neither at the EOL. These populations varied in their demographic, region, and clinical characteristics. Decedents who received home health only compared with hospice only were younger (44.1% over age 85 vs. 58.4%), members of a racially/ethnically diverse group (19.7% vs. 10.9%), and with less disability (37.2% required no assistance with activities of daily living vs. 22.7%), all p values <0.05. In adjusted models, those receiving home health versus hospice received similar numbers of visits per 30 days (average 5.4/30 vs. 6.6/30), while those receiving both received more visits (10.5/30). Home health provided more therapy visits, while hospice provided more social work and aide visits. Conclusions: More than one in three Medicare decedents nationwide received home health at the EOL. Home health has the potential to serve a population not reached by hospice and improve the quality of end-of-life care.

Use of hospitals in the New York City Metropolitan Region, by race: how separate? How equal in resources and quality?

BACKGROUND: Although racial and ethnic minorities disproportionately use some hospitals, hospital-based racial and ethnic composition relative to geographic region and its association with quality indicators has not been systematically analyzed. METHODS: We used four race and ethnicity categories: non-Hispanic white (NHW), non-Hispanic black (NHB), Hispanic, and Asian/Pacific Islander/Alaskan Native/American Indian (API/AIAN), as well as a combined non-NHW category, from the 2010 (latest year publicly available) Medicare Institutional Provider & Beneficiary Summary public use file for 84 hospitals in the New York City region. We assessed the relative distribution of race and ethnicity across hospitals grouped at different geographic levels (region, county, hospital referral region [HRR], or hospital service areas [HSA]) using the dissimilarity index. Hospital characteristics included quality star ratings, essential professional services and diagnostic/treatment equipment, bed size, total expenses, and patients with dual Medicare and Medicaid enrollment. We assessed Spearman's rank correlation between hospital-based racial and ethnic composition and quality/structural measures. RESULTS: Dissimilarity Index decreases from region (range 30.3-40.1%) to county (range 13.7-23.5%), HRR (range 10.5-27.5%), and HSA (range 12.0-16.9%) levels. Hospitals with larger non-NHW patients tended to have lower hospital ratings and higher proportions of dually-enrolled patients. They were also more likely to be safety net hospitals and non-federal governmental hospitals. CONCLUSIONS: In the NYC metropolitan region, there is considerable hospital-based racial and ethnic segregation of Medicare patients among non-NHW populations, extending previous research limited to NHB. Availability of data on racial and ethnic composition of hospitals should be made publicly available for researchers and consumers.

Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study.

CONTEXT: In the United States, 30% of all deaths occur at home. Effective symptom management is integral to quality end-of-life (EOL) care. Family caregivers play a major role in EOL symptom management. Recent federal policies emphasize the need to improve training and support for family caregivers. OBJECTIVES: In a nationally representative sample: 1) Characterize the population of caregivers assisting with and reporting difficulty in symptom management at the end of life; and 2) Assess caregiver and care recipient characteristics associated with caregiver report of difficulty. METHODS: Cross-sectional analysis of data from the National Health and Aging Trends Study and National Study of Caregiving. Multivariable logistic regression to assess association between care recipient and caregiver characteristics and caregiver report of difficulty. RESULTS: Caregivers (n = 214) were mean age 57.1 years, 74% female, and 86% white non-Hispanic. Over 2 million family caregivers provided assistance with symptom management in the last month of life in 2017; 78% reported difficulty. Non-Hispanic Black caregivers (aOR 0.24, 95% CI 0.08-0.75), Hispanic caregivers (0.13, 0.03-0.56), and caregivers with lower than high school education (0.26, 0.11-0.63) were less likely to report difficulty. Caregivers of care recipients who received paid care (3.37, 1.30-8.69) were more likely to report difficulty. Receipt of training and support services (1.80, 0.83-3.93) and hospice (1.83, 0.82-4.07) were not associated with caregiver report of difficulty. CONCLUSION: These findings underscore the need to improve training and support for family caregivers in EOL symptom management.