Racial Differences in Palliative Care Use in Heart Failure Decedents.

BACKGROUND: Minoritized individuals experience greater heart failure (HF) incidence and mortality rates, yet racial disparities in palliative care (PC) in HF are unknown. METHODS: This retrospective study used electronic medical records to identify adults who were hospitalized at an academic health system and died due to HF between 2012 and 2018. Using multivariable logistic regression, we examined associations between decedents' characteristics and PC consultations (PCCs). RESULTS: Of 1987 decedents, 45.8% (n = 911) received PCCs. Black decedents had 60% greater odds of receiving PCCs (OR = 1.60; 95% CI = 1.21-2.11) than whites. Median time from PCC to death was shorter among white than Black decedents (31.2 vs 51.5 days; P = .001). Mean age at death was younger among Black than white decedents (71.3 [14.8] vs 81.8 [12.3]; P < .001) and decedents of "other" races (71.3 [14.8] vs. 80.3 [10.4]; P = .001). Black decedents were more likely than whites to receive inotropes (54.4% vs 42.3%; P < .001) and to be admitted to hospitals (39.5% vs 29.7%; P < .001) and intensive care units in their last month (30.3% vs 18.3%; P < .001). CONCLUSIONS: Findings suggest greater recognition of palliative-care needs among Black individuals with HF; however, most referrals to PC occur late in the disease trajectory.

Palliative Care for Patients With Heart Failure: Results From a Heart Failure Society of America Survey.

BACKGROUND: Multiple guidelines recommend specialty palliative care (PC) for patients with heart failure (HF), including patients with left ventricular assist devices (LVADs). However, the degree of integration and clinicians' perceptions of PC in HF care remain incompletely characterized. METHODS AND RESULTS: A 36-item survey was sent to 2109 members of the Heart Failure Society of America. Eighty respondents (53% physicians), including 51 respondents from at least 42 medical centers, completed the survey, with the majority practicing in urban (76%) academic medical centers (62%) that implanted LVADs (81%). Among the 42 unique medical centers identified, respondents reported both independent (40%) and integrated (40%) outpatient PC clinic models, whereas 12% reported not having outpatient PC at their institutions. A minority (12%) reported that their institution used triggered PC referrals based on objective clinical data. Of respondents from LVAD sites, the majority reported that a clinician from the PC team was required to see all patients prior to implantation, but there was variability in practices. Among all respondents, the most common reasons for PC referral in HF were poor prognosis, consideration of advanced cardiac therapies or other high-risk procedures and advance-care planning or goals-of-care discussions. The most frequent perceived barriers to PC consultation included lack of PC clinicians, unpredictable HF clinical trajectories and limited understanding of how PC can complement traditional HF care. CONCLUSION: PC integration and clinician perceptions of services vary in HF care. More research and guidance regarding evidence-based models of PC delivery in HF are needed.

Barriers of Acceptance to Hospice Care: a Randomized Vignette-Based Experiment.

BACKGROUND: The per diem financial structure of hospice care may lead agencies to consider patient-level factors when weighing admissions. OBJECTIVE: To investigate if treatment cost, disease complexity, and diagnosis are associated with hospice willingness to accept patients. DESIGN: In this 2019 online survey study, individuals involved in hospice admissions decisions were randomized to view one of six hypothetical patient vignettes: "high-cost, high-complexity," "low-cost, high-complexity," and "low-cost, low-complexity" within two diseases: heart failure and cystic fibrosis. Vignettes included demographics, prognoses, goals, and medications with costs. Respondents indicated their perceived likelihood of acceptance to their hospice; if likelihood was <100%, respondents were asked the barriers to acceptance. We used bivariate tests to examine associations between demographic, clinical, and organizational factors and likelihood of acceptance. PARTICIPANTS: Individuals involved in hospice admissions decisions MAIN MEASURES: Likelihood of acceptance to hospice care KEY RESULTS: N=495 (76% female, 53% age 45-64). Likelihoods of acceptance in cystic fibrosis were 79.8% (high-cost, high-complexity), 92.4% (low-cost, high-complexity), and 91.5% (low-cost, low-complexity), and in heart failure were 65.9% (high-cost, high-complexity), 87.3% (low-cost, high-complexity), and 96.6% (low-cost, low-complexity). For both heart failure and cystic fibrosis, respondents were less likely to accept the high-cost, high-complexity patient than the low-cost, high-complexity patient (65.9% vs. 87.3%, 79.8% vs. 92.4%, both p<0.001). For heart failure, respondents were less likely to accept the low-cost, high-complexity patient than the low-cost, low-complexity patient (87.3% vs. 96.6%, p=0.004). Treatment cost was the most common barrier for 5 of 6 vignettes. CONCLUSIONS: This study suggests that patients receiving expensive and/or complex treatments for palliation may have difficulty accessing hospice.

Rural-Urban Disparities in Mortality From Cirrhosis in the United States From 1999 to 2019.

INTRODUCTION: We examined trends in rural-urban cirrhosis mortality disparities in the United States from decedents aged 25 years and older from 1999 to 2019. METHODS: We calculated cirrhosis age-adjusted mortality rates across 3 population categories: large metropolitan (≥1 million), medium/small metropolitan (50,000-999,999), and rural (<50,000) areas using the US Centers for Disease Control and Prevention Wide-ranging ONline Data for Epidemiologic Research database. RESULTS: We found an almost 20-fold increase in the absolute difference in cirrhosis age-adjusted mortality rates between rural and large metropolitan areas between 1999 and 2019. DISCUSSION: Future research is needed to investigate reasons for this widening rural-urban disparity to improve rural cirrhosis care.

Racial Differences in Firearms Used and Autopsies Following Gun Deaths Exist.

INTRODUCTION: Disparities in gun violence across race are well documented. Studying these disparities is essential to reduce preventable gun deaths. This study evaluates the relationship between sociodemographic factors and firearms used in gun deaths. MATERIALS AND METHODS: This retrospective cohort study of firearm mortalities from 2009 to 2018 used the Mortality Multiple Cause-of-Death Public Use Record from the National Center for Health Statistics. The primary outcome was the type of firearm used and the secondary outcome was autopsy status. Factors of interest include race, ethnicity, gender, marital status, age, education, and place of death. Factors significantly associated with outcomes in univariate analyses were included in separate multivariate logistic regression models for assaults, intentional self-harm, and accidents. RESULTS: A total of 276,127 firearm deaths from 2009 to 2018 were analyzed. Compared to White victims, Black victims were less likely to die from handguns (accident: odds ratio [OR] = 0.70, P < 0.05; self-harm: OR = 0.84, P < 0.001; assault: OR = 0.58, P < 0.001) and rifles, shotguns, or large firearms (accident: OR = 0.30, P < 0.001; self-harm: OR = 0.37, P < 0.001; assault: OR = 0.28, P < 0.001). Black decedents were more likely to undergo autopsy than White decedents (accident: OR = 2.14, P < 0.001; intentional self-harm: OR = 2.02, P < 0.001; assault: OR = 2.02, P < 0.001). Ethnicity, gender, marital status, age, education, and other racial identities were also associated with firearms used and autopsy rates (P < 0.05). CONCLUSIONS: Differences in firearms used and autopsy rates following gun deaths exist by race, ethnicity, gender, marital status, age, and education. Future studies should investigate the relationship between sociodemographic factors and firearms used and autopsy status following gun deaths.

Evaluating the Contribution of Patient-Provider Communication and Cancer Diagnosis to Racial Disparities in End-of-Life Care Among Medicare Beneficiaries.

BACKGROUND: The quality of end-of-life (EOL) care in the USA remains suboptimal, with significant variations in care by race and across disease subgroups. Patient-provider communication may contribute to racial and disease-specific variations in EOL care outcomes. OBJECTIVE: We examined racial disparities in EOL care, by disease group (cancer vs. non-cancer), and assessed whether racial differences in patient-provider communication accounted for observed disparities. DESIGN: Retrospective cohort study using the 2001-2015 Surveillance, Epidemiology, and End Results - Consumer Assessment of Healthcare Providers and Systems data linked with Medicare claims (SEER-CAHPS). We employed stratified propensity score matching and modified Poisson regression analyses, adjusting for clinical and demographic characteristics PARTICIPANTS: Black and White Medicare beneficiaries 65 years or older with cancer (N=2000) or without cancer (N=11,524). MAIN MEASURES: End-of-life care measures included hospice use, inpatient hospitalizations, intensive care unit (ICU) stays, and emergency department (ED) visits, during the 90 days prior to death. KEY RESULTS: When considering all conditions together (cancer + non-cancer), Black beneficiaries were 26% less likely than their Whites counterparts to enroll in hospice (adjusted risk ratio [ARR]: 0.74, 95%CI: 0.66-0.83). Among beneficiaries without cancer, Black beneficiaries had a 32% lower likelihood of enrolling in hospice (ARR: 0.68, 95%CI: 0.59-0.79). There was no racial difference in hospice enrollment among cancer patients. Black beneficiaries were also at increased risk for ED use (ARR: 1.12, 95%CI: 1.01-1.26). Patient-provider communication did not explain racial disparities in hospice or ED use. There were no racial differences in hospitalizations or ICU admissions. CONCLUSION: We observed racial disparities in hospice use and ED visits in the 90 days prior to death among Medicare beneficiaries; however, hospice disparities were largely driven by patients without cancer. Condition-specific differences in palliative care integration at the end-of-life may partly account for variations in EOL care disparities across disease groups.

Social Deprivation and End-of-Life Care Use Among Adults With Cancer.

PURPOSE: Socioeconomic differences are partially responsible for racial inequities in cancer outcomes, yet the association of area-level socioeconomic disadvantage and race with end-of-life (EOL) cancer care quality is poorly understood. METHODS: This retrospective study used electronic medical records from an academic health system to identify 33,635 adults with cancer who died between 2013 and 2019. Using multivariable logistic regression, we examined associations between decedent characteristics and EOL care, including emergency department (ED) visits, intensive care unit (ICU) stays, palliative care consultation (PCC), hospice order, and in-hospital deaths. Social deprivation index was used to measure socioeconomic disadvantages. RESULTS: Racially minoritized decedents had higher odds of ICU stay than the least deprived White decedents (eg, other race Q3: aOR, 2.06 [99% CI, 1.26 to 0.3.39]). White and Black decedents from more deprived areas had lower odds of ED visit (White Q3: aOR, 0.382 [99% CI, 0.263 to 0.556]; Black Q3: aOR, 0.566 [99% CI, 0.373 to 0.858]) than least deprived White decedents. Compared with White decedents living in least deprived areas, racially minoritized decedents had higher odds of receiving PCC and hospice order, whereas White decedents in most deprived areas had lower odds of PCC (aOR, 0.727 [99% CI, 0.592 to 0.893]) and hospice order (aOR, 0.845 [99% CI, 0.724 to 0.986]). Greater deprivation was associated with greater odds of hospital death relative to least deprived White decedents, but only among minoritized decedents (eg, Black Q4: aOR, 2.16 [99% CI, 1.82 to 2.56]). CONCLUSION: Area-level socioeconomic disadvantage is not uniformly associated with poorer EOL cancer care, with differences among decedents of different racial groups.

Public Health and Palliative Care.

Meeting the needs of people at the end of life (EOL) is a public health (PH) concern, yet a PH approach has not been widely applied to EOL care. The design of hospice in the United States, with its focus on cost containment, has resulted in disparities in EOL care use and quality. Individuals with non-cancer diagnoses, minoritized individuals, individuals of lower socioeconomic status, and those who do not yet qualify for hospice are particularly disadvantaged by the existing hospice policy. New models of palliative care (both hospice and non-hospice) are needed to equitably address the burden of suffering from a serious illness.

Trends in Location of Death Among Older Adult Americans After Falls.

Introduction: Fall-related mortality is increasing among older adults, yet trends and changes in the location of fall-attributed deaths are unknown; additionally, potential disparities are understudied. Methods: To assess trends/factors associated with place of death among older adult fall deaths in the US, a cross-sectional analysis of deaths using mortality data from 2003-2017 was performed. Results: Most deaths occurred in hospitals, however, the proportion decreased from 66.4% (n = 9,095) to 50.7% (n = 15,817). The proportion occurring in nursing facilities decreased from 15.9% (n = 2175) to 15.3% (n = 4,778), while deaths at home and in hospice facilities increased. Male, Black, Native American, and married decedents had increased odds of hospital death. Conclusion: As fall deaths increase among older adults, end-of-life needs of this population deserve increased attention. Research should explore needs and preferences of older adults who experience falls and their caregivers to reduce disparities in place of death and to ensure high quality of care is received.

"That Little Bit of Time": Transition-to-Hospice Perspectives From Hospice Staff and Bereaved Family.

BACKGROUND AND OBJECTIVES: Many patients lack understanding of hospice services and their preparation for the transition to hospice at home may be insufficient. This study explored how hospice admissions staff and caregivers of hospice patients perceive the hospice admission process and the transition to hospice at home. RESEARCH DESIGN AND METHODS: We conducted in-depth, semistructured interviews with 2 subgroups: hospice admissions staff (n = 15) and bereaved caregivers of former hospice patients (n = 20). We performed a 3-coder descriptive content analysis. RESULTS: There were 4 overall themes: (a) issues relating to the referring/prehospice provider, (b) issues relating to hospital discharge/care transition home, (c) issues relating to the first touch of hospice, and (d) the impact of coronavirus disease 2019 (COVID-19) on hospice admissions. Patients are often referred to hospice without clear prognostic understanding, at times placing staff in the uncomfortable position of breaking difficult news. Stigma may make patients and families fearful of enrolling in hospice, and misconceptions about hospice are common. Caregivers emphasize the need for increased attention to their emotional needs. Staff revealed the emotional challenges they experience conducting admissions. Both staff and caregivers indicate that the transition to hospice is often emotionally and logistically burdensome, especially when discharging home from the hospital. Both subgroups report insufficient caregiver preparation for taking care of a dying patient at home, particularly regarding medication management. COVID-19 created challenges yet prompted innovative changes to hospice admission processes. DISCUSSION AND IMPLICATIONS: Findings demonstrate a need to improve the hospice admissions process, better supporting terminally ill patients and their families.

Use of Theoretical Frameworks in the Development and Testing of Palliative Care Interventions.

CONTEXT: Palliative care (PC) research has grown over the last 20 years. Yet, the causal components and pathways of PC interventions remain unclear. OBJECTIVES: To document the prevalence and application of theoretical frameworks in developing and testing PC interventions. METHODS: We conducted a secondary analysis of previously published systematic reviews of PC randomized clinical trials. Trials were evaluated for explicit mention of a theoretical framework, process or delivery model, or clinical practice guideline that supported the development of the intervention. We used a structured data extraction form to document study population, outcomes, and whether and how authors used a theoretical framework, process/delivery model, or clinical practice guideline. We applied an adapted coding scheme to evaluate use of theoretical frameworks. RESULTS: We reviewed 85 PC trials conducted between 1984 and 2021. Thirty-eight percent (n = 32) of trials explicitly mentioned a theoretical framework, process or delivery model, or clinical practice guideline as a foundation for the intervention design. Only nine trials included a theoretical framework, while the remaining 23 cited a process/delivery model or clinical practice guideline. CONCLUSION: Most PC trials do not cite a theoretical foundation for their intervention design. Future work should focus on developing and validating new theoretical frameworks and modifying existing theories and models to better explain the mechanisms of the variety of PC interventions.

"He Needed Just About Everything": Caring for Aging Adults Postincarceration.

METHODS: We conducted a thematic analysis on semi-structured interviews with 11 caregivers. RESULTS: Caregivers discussed how prior incarceration coupled with aging present barriers to housing, employment, and safety-net benefits-making caregiving more difficult. Caregivers assist their older care recipients to develop essential life skills (e.g., scheduling tasks, applying for services) and navigate the dynamic aging process (e.g., loneliness, illness). Caregivers struggle to gain care recipients' trust, often due to their past trauma. DISCUSSION: Caregivers play essential roles supporting older adults postincarceration, yet they experience significant challenges with limited resources. This study informed the development of a resource guide to assist caregivers. Dedicated programs and policies are needed to address these needs at the local level.

National Trends in Hospice Facility Deaths in the United States, 2003-2017.

CONTEXT: Hospice facilities are increasingly preferred as a location of death, but little is known about the characteristics of patients who die in these facilities in the U.S. OBJECTIVES: We sought to examine the trends and factors associated with death in a hospice facility. METHODS: Retrospective cross-sectional study using mortality data for years 2003-2017 for deaths attributed to natural causes in the U.S. RESULTS: The proportion of natural deaths occurring in hospice facilities increased from 0.2% in 2003 to 8.3% in 2017, resulting in nearly 1.7 million deaths during this time frame. Females had increased odds of hospice facility deaths (odds ratio [OR] = 1.04; 95% CI = 1.04, 1.05). Nonwhite race was associated with lower odds of hospice facility death (black [OR = 0.915; 95% CI = 0.890, 0.940]; Native American [OR = 0.559; 95% CI = 0.515, 0.607]; and Asian [OR = 0.655; 95% CI = 0.601, 0.713]). Being married was associated with hospice facility death (OR = 1.06; 95% CI = 1.04, 1.07). Older age was associated with increased odds of hospice facility death (85 and older [OR = 1.40; 95% CI = 1.39, 1.41]). Having at least some college education was associated with increased odds of hospice facility death (OR = 1.13; 95% CI = 1.11, 1.15). Decedents from cardiovascular disease had the lowest odds of hospice facility death (OR = 0.278; 95% CI = 0.274, 0.282). CONCLUSION: Hospice facility deaths increased among all patient groups; however, striking differences exist by age, sex, race, marital status, education level, cause of death, and geography. Factors underlying these disparities should be examined.

Trends in Place of Death for Individuals With Deaths Attributed to Advanced Chronic or End-Stage Kidney Disease in the United States.

CONTEXT: An important aspect of end-of-life care, place of death is understudied in advanced chronic (CKD) and end-stage kidney disease (ESKD). OBJECTIVE: We sought to examine trends and factors associated with where advanced CKD/ESKD patients die. METHODS: We conducted a retrospective cross-sectional study using mortality data from 2003 to 2017 for deaths attributed primarily to advanced CKD/ESKD in the United States. RESULTS: Between 2003 and 2017, 222,247 deaths were attributed to advanced CKD/ESKD. From 2003 to 2017, deaths occurring in hospitals declined from 56.0% (n = 5356) to 35.6% (n = 7764), whereas increases occurred in deaths at home (13.5% [n = 1292] to 24.3% [n = 5306]), nursing facilities (18.6% [n = 1776] to 19.3% [n = 4221]), and hospice facilities (0.3% [n = 29] to 13.4% [n = 2917]). Nonwhite race was associated with increased odds of hospital death (Black [OR = 1.59; 95% CI = 1.55, 1.62]; Native American [OR = 1.47; 95% CI = 1.32, 1.63]; Asian [OR = 1.43; 95% CI = 1.32, 1.55] and reduced odds of nursing facility (Black [OR = 0.622; 95% CI = 0.600, 0.645]; Native American [OR = 0.638; 95% CI = 0.572, 0.712]; Asian [OR = 0.574; 95% CI = 0.533, 0.619], or hospice facility death (Black [OR = 0.843; 95% CI = 0.773, 0.918]; Native American [OR = 0.380; 95% CI = 0.289, 0.500]; Asian [OR = 0.609; 95% CI = 0.502, 0.739]). Older age was associated with reduced odds of hospital death (≥85 [OR = 0.334; 95% CI = 0.312, 0.358]) and increased odds of home (≥85 [OR = 1.55; 95% CI = 1.43, 1.68]), nursing facility (≥85 [OR = 3.09; 95% CI = 2.76, 3.45]) or hospice facility death (≥85 [OR = 1.60; 95% CI = 1.49, 1.72]). CONCLUSIONS: Hospitals remain the most common place of death from advanced CKD/ESKD; however, the proportion of home, nursing facility, and hospice facility deaths have increased.

Place of Death for Individuals With Chronic Lung Disease: Trends and Associated Factors From 2003 to 2017 in the United States.

BACKGROUND: Although chronic lung disease is a common cause of mortality, little is known about where individuals with chronic lung disease die. RESEARCH QUESTION: The aim of this study was to determine the trends and factors associated with place of death among individuals with chronic lung disease. STUDY DESIGN AND METHODS: This cross-sectional analysis of natural deaths was conducted by using the Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research from 2003 to 2017 for which COPD, interstitial lung disease (ILD), or cystic fibrosis (CF) was the underlying cause. Place of death was categorized as hospital, home, nursing facility, hospice facility, and other. RESULTS: From 2003 to 2017, more than 2.2. million deaths were primarily attributed to chronic lung disease (51.6% female, 92.4% white). Most were attributed to COPD (88.9%), followed by ILD (10.8.%), and CF (0.3%). Hospital and nursing facility deaths declined from 44.4% (n = 59,470) and 22.6% (n = 30,285) to 28.3% (n = 49,655) and 19.7% (n = 34,495), while home and hospice facility deaths increased from 23.3% (n = 31,296) and 0.1% (n = 192) to 34.7% (n = 60,851) and 9.0% (n = 15,861), respectively. Male sex, being married, and having some college education were associated with increased odds of home death, whereas non-white race and Hispanic ethnicity were associated with increased odds of hospital death. Compared with individuals with COPD, individuals with ILD and CF had increased odds of hospital death and reduced odds of home, nursing facility, or hospice facility death. INTERPRETATION: Home deaths are rising among decedents from chronic lung disease, increasing the need for quality end-of-life care in this setting. Further research should explore the end-of-life needs and preferences of these patients and their caregivers, with particular attention paid to patients with ILD and CF who continue to have high rates of hospital death.