Disparities in end-of-life care for racial minorities: a narrative review.

BACKGROUND AND OBJECTIVE: The issue of racial and ethnic disparities in healthcare has been a significant concern for many years. It encompasses various aspects, including disease prevention, diagnosis, management, and end-of-life (EOL) care. Research has found that timely intervention with palliative care can result in better EOL care and reduced healthcare costs. This review aims to detail the role of healthcare disparities impacting palliative care, hospice enrollment, and EOL care in patients with serious illnesses who are facing EOL. It addresses the factors that play a role in creating these disparities and describes specific interventions that may reduce disparities in the provision of EOL care. METHODS: Authors searched, PubMed Central, Medline, and PubMed databases using Racial Disparity and End-of-Life/Palliative Care combinations. A total of 57 studies were identified. All articles were reviewed, and the available evidence was synthesized and to identify key domains in EOL care impacted by racial disparities and the factors contributing to them. KEY CONTENT AND FINDINGS: Several patient, provider, and institutional level factors may be responsible for disparities seen in EOL care, including health literacy, access to care, mistrust of the healthcare system, social determinants of health (SDH), medical racism, cultural and religious customs, and communication at EOL. Disparities in EOL care experienced by minority patients is an extension of the systemic and institutionalized racism rampant in the healthcare system. Providers must work on multiple fronts to address this inequity and injustice, the first of which is recognition and conversation regarding disparities in EOL care. CONCLUSIONS: Disparities in communication, palliative and hospice care utilization, and symptom management must be eradicated. Palliative care and hospice should be made accessible for all patients and families experiencing severe illness regardless of their racial or ethnic background.

Clinician Perception of Likelihood of Death in the Next Year Is Associated With 1-Year Mortality and Hospice Use Among Older Adults Receiving Home Health Care.

Background: Given the complex care needs of older adults receiving home health care (HHC), it is important for HHC clinicians to identify those with limited prognosis who may benefit from a transition to hospice care. Objectives: To assess the association between HHC clinician-identified likelihood of death and (1) 1-year mortality, and (2) hospice use. Methods: Prospective cohort study from the National Health and Aging Trends Study (NHATS) waves 2011-2018, linked to the Outcomes and Assessment Information Set (OASIS) HHC assessment and Medicare data among 915 community-dwelling NHATS respondents. HHC clinician-identified likelihood of death/decline was determined using OASIS item M1034. Multivariable logistic regression was used to assess the association between clinician-identified likelihood of death/decline and 1-year mortality and hospice use. Results: HHC clinicians identified 42% of the sample as at increased risk of decline or death. One year mortality was 22.3% (n = 548), and 15.88% (n = 303) used hospice within 12 months of HHC. HHC clinician-perceived likelihood of death/decline was associated with greater odds of 1-year mortality (odds ratio [OR], 6.57; confidence interval (95% CI), 2.56-16.90) and was associated with greater likelihood of hospice use (OR, 1.61; 95% CI, 1.00-2.62). Conclusion: HHC clinician perception of patients' risk of death or decline is associated with 1-year mortality. A better understanding of HHC patients at high risk for mortality can facilitate improved care planning and identification of homebound older adults who may benefit from hospice.

Comparing the use of aggressive end-of life care among frail and non-frail patients with cancer using a claims-based frailty index.

INTRODUCTION: Despite mounting consensus that end-of-life (EOL) care for patients with cancer should focus on improving quality of life, many patients continue to receive aggressive, disease-oriented treatment until death. Within this group, patients with increased frailty may be at higher risk of adverse treatment-related outcomes. We therefore examined the relationship between degree of frailty and receipt of aggressive EOL care among Medicare-insured patients with cancer in Ohio. MATERIALS AND METHODS: From the Ohio Cancer Incidence Surveillance System (OCISS) linked with Medicare claims, we identified patients diagnosed with breast, colorectal, lung, or prostate cancer who died between 2012 and 2016. Frailty was operationalized using a validated claims-based frailty index. Six quality indicators reflecting receipt of aggressive EOL care were identified from claims: (1) any cancer-directed treatment, (2) >1 emergency department (ED) visit, (3) >1 hospital admission, (4) any intensive care unit (ICU) admission in the last 30 days of life, (5) entry to hospice in the last three days of life, and (6) in-hospital mortality. Multivariable logistic regression analysis was performed to control for demographic factors, Medicare and Medicaid dual enrollment, and cancer type and stage in the relationship between frailty and aggressive EOL care. RESULTS: Overall, 31,465 patients met selection criteria. Patients with moderate/severe frailty were less likely than non-/pre-frail patients to receive any aggressive EOL care (adjusted odds ratio [aOR] 0.92 [95% confidence interval 0.86-0.99]). This group was also less likely to undergo cancer-directed treatment in their last 30 days or to enter hospice in their last three days. Increasing frailty was associated with lower odds of admission to the ICU in the last 30 days of life (mild frailty: aOR 0.88 [0.83-0.94]; moderate/severe frailty: aOR 0.85 [0.78-0.92]) or of dying in-hospital (mild frailty: 0.85 [0.79-0.91]; moderate/severe frailty: aOR 0.74 [0.67-0.82]), but higher odds of having >1 ED visit in the last 30 days of life (mild frailty: aOR 1.43 [1.32-1.53]; moderate/severe frailty: aOR 1.61 [1.47-1.77]). DISCUSSION: These findings suggest the need for more explicit discussion of emergency care seeking for patients with cancer at the end of life.

Patient-Caregiver Dyads & End-of-Life Care: Caregiver Personality Disrupts Gender-Based Norms.

CONTEXT: Gender and personality may individually impact end-of-life care. Men often receive more aggressive treatments than women near death, and personality - particularly openness - may be associated with increased care utilization when it diverges from traditional treatment norms. However, research has not examined the interaction of these variables in a dyadic context. OBJECTIVES: This study examined the dyadic effects of patient gender and caregiver personality on end-of-life care. METHODS: Using data from the VOICE randomized clinical trial, the present sample consisted of patient-caregiver dyads receiving outpatient care for advanced cancer in Sacramento and Western New York. Analyses assessed whether caregiver personality was associated with gender-based differences in patient chemotherapy or emergency department/inpatient visits in the 30 days before death. Logistic regression examined the interaction between caregivers' Big Five personality dimensions and patient gender while accounting for patient and caregiver demographic and health characteristics. RESULTS: Of a total of 134 patient-caregiver dyads, 19.4% (n = 26) of patients received chemotherapy and 47.8% (n = 64) had an emergency department/inpatient visit in the 30 days before death. Results demonstrated a significant interaction between caregiver openness and patient gender on receipt of chemotherapy (odds ratio = 0.07, p = 0.006). When caregivers were less open, men were more likely to receive chemotherapy near death, whereas when caregivers were more open, women were more likely to receive chemotherapy near death. CONCLUSION: Results suggest caregiver personality characteristics, particularly openness, might disrupt gender-based treatment norms at end-of-life. Findings demonstrate that patient and caregiver factors can interact to explain patient healthcare utilization.

Grief Training in Palliative Care Fellowships.

INTRODUCTION: No prior study has assessed grief and bereavement curriculum in Hospice and Palliative Medicine (HPM) fellowship programs in the United States. METHODS: A 14-item survey was created and distributed to Accreditation Council for Graduate Medical Education (ACGME)-accredited HPM fellowship Program Directors to assess program demographics, curriculum emphasis, grief and bereavement programming, and attitudes toward grief and bereavement training for HPM fellows. RESULTS: The overall survey response rate was 63%. Most palliative care programs were academic (74%) and had four or fewer fellows (85%). 90% devoted a minority (0%-10%) of their curriculum to grief and bereavement training. Most programs reported at least some program-led grief and bereavement programming (69%); however, 53% endorsed that fellows are not very or not at all involved in this programming. Almost half of programs only have a small amount of programming related to supporting families after loss (49%). The majority endorsed having a great deal of programming for debriefing or supporting fellows through professional grief (55%), and the most common modalities were debriefing sessions (62%) and ensuring access to mental health resources (41%). The most common ways of teaching grief and bereavement were through bedside/anecdotal teaching and lectures/case conferences. Most program directors felt that palliative care fellowships should provide grief and bereavement training (81%) and consider it important or very important for fellows to learn how to process grief and bereavement (92%). DISCUSSION: It was widely reported by program directors that grief and bereavement training are important curricular components for HPM fellows. Acknowledging professional grief remains an underrecognized need in palliative care training and practice. Our study suggests that for grief and bereavement curricula in HPM fellowships, the time dedicated, specific types, and amount of fellow involvement was highly variable. It will be critical for programs to disseminate best practices to help move toward a more uniform approach for ensuring basic competency in grief and bereavement training in HPM fellowship programs in the United States.

Cost and Utilization Implications of a Health Plan's Home-Based Palliative Care Program.

Background: A California-based health plan offered home-based palliative care (HBPC) to members who needed support at home but did not yet qualify for hospice. Objectives: This study compares hospital and emergency department (ED) utilization and costs and mortality for individuals receiving HBPC to a cohort not receiving palliative care services (Usual Care). Design: This is an observational retrospective study using claims data covering a prestudy period and a study period during which time half of the study population received HBPC services. Setting/Subjects: Seriously ill individuals who received HBPC were matched with those receiving Usual Care using a propensity-based matching algorithm. Intervention: Interdisciplinary teams from home health and hospice agencies provided HBPC services. Measurements: Outcome measures included hospital and ED utilization and cost before and during the study period and mortality during the study period. Results: For both groups, hospital and ED utilization and associated costs were higher during the prestudy period than during the study period. No differences were found in outcome measures between groups during the study period. Average time in the study period was longer for the HBPC group than that in the Usual Care group, indicating that they lived longer or transitioned to hospice later. Conclusion: Although individuals in both groups were living with serious illnesses for which worsening health and increased acute care utilization are expected over time, both groups had reduced acute care utilization and costs during the study period compared with the prestudy period. Reduced utilization and costs were equivalent for both groups.

Exploring the effects of acceptable palliative care models on survival time and healthcare expenditure among patients with cancer: a national longitudinal population-based study.

OBJECTIVE: Hospice care ensures better end-of-life quality by relieving terminal symptoms. Prior research has indicated that hospice care could prolong survival and reduce end-of-life medical expenditures among patients with cancer. However, the dearth of studies on the effects of hospice care type and use sequence on survival time and end-of-life medical expenditures substantiates the need for investigation. DATA SOURCES AND STUDY SETTING: Two million random records were obtained from the National Health Insurance Research Database. STUDY DESIGN: We estimated the effects of the type and sequence of hospice care use on survival time and medical expenditures among advanced cancer patients. This was a cross-sectional study. DATA COLLECTION/EXTRACTION METHODS: Patient data were collected from 2 million random records provided by the National Health Insurance Research Database of Taiwan. We included people with cancer and excluded patients under 20 years of age; 2860 patients remained after matching. PRINCIPAL FINDINGS: The results indicated that the average survival time of patients who received inpatient palliative care (1022 days) was significantly shorter than that of patients who did not receive palliative care (P < 0.001), but the health care expenditure during the entire course of cancer therapy was not the lowest. Interestingly, patients who received inpatient palliative care had the lowest health care expenditure at 1 year or month before the end of life (P < 0.001). CONCLUSION: The type and sequence of palliative care affected the survival time and health care expenditures of cancer patients. Receiving palliative care did not prolong survival but rather reduced health care expenditures. The sequence of receiving palliative care significantly affected health care expenditures.

Assessment of Feelings Towards Advanced Care Planning in the Latino Community.

BACKGROUND: Previous studies have noted that participation in advanced care planning (ACP) and end-of-life (EOL) discussions remain low among Latino communities. Various studies have found that interventions within Latino communities can positively improve engagement in ACP, however, minimal research exists regarding patient satisfaction of ACP discussions with healthcare providers outside of preorganized educational interventions. Our study aims to understand how conversations about ACP are perceived by Latino patients in a primary care setting. METHODS: Subjects were identified from the institution's family medicine clinic from October 2021 to October 2022. Participants were those over the age of 50 who identified as Latino and were available at the clinic on the day of survey administration. An 8-question, 5-point, Likert scale survey assessed perceptions about ACP planning and gauged satisfaction of conversations with health care providers. The survey concluded with a multiple-choice question inquiring about individuals whom patients have spoken to regarding ACP/EOL wishes. Survey data was gathered through Qualtrics. RESULTS: Of the 33 patients, the majority have at least somewhat thought about their EOL wishes (avg = 3.48/5). Most usually felt they were given enough time with their doctor (avg = 4.12/5) and comfortable speaking about ACP and EOL decisions (avg = 4.55/5). Generally, participants felt somewhat happy with how their doctor has spoken about ACP/EOL care (avg = 3.24/5). However, patients only felt a little to somewhat satisfied with the explanation of ACP/EOL from providers (avg = 2.82/5) and a little to somewhat confident in having the proper forms in place (avg = 2.76/5). Religious officials were a little to somewhat important to these conversations (avg = 2.55/5). Overall, patients have discussed ACP more frequently with family members and friends than health care providers, lawyers, or religious leaders. CONCLUSIONS: The initial data demonstrates that many Latino patients are engaging in ACP conversations, both with healthcare providers and loved ones. Patients largely feel comfortable discussing EOL wishes with their doctor suggesting a trustful relationship. However, patients are only somewhat happy with these ACP conversations. Our study highlights a need for enhanced ACP education to improve satisfaction and confidence in formal documentation. Physicians should continue to engage and individualize ACP discussions to increase EOL preparedness among Latino patients.

A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis.

Long driving times from hospice providers to patients lead to poor quality of care, which may exacerbate in rural and highly isolated areas of Appalachia. This study aimed to investigate geographic patterns of pediatric hospice care across Appalachia. Using person-level Medicaid claims of 1,788 pediatric hospice enrollees who resided in the Appalachian Region between 2011 and 2013. A database of boundaries of Appalachian counties, postal addresses of hospices, and population-weighted county centroids of residences of hospice enrollees driving times from the nearest hospices were calculated. A choropleth map was created to visualize rural/urban differences in receiving hospice care. The average driving time from hospice to child residence was 28 minutes (SD = 26). The longest driving time was in Eastern Kentucky-126 minutes (SD = 32), and the shortest was in South Carolina-11 min (SD = 9.1). The most significant differences in driving times between rural and urban counties were found in Virginia 28 (SD = 7.5) and 5 minutes (SD = 0), respectively, Tennessee-43 (SD = 28) and 8 minutes (SD = 7), respectively; and West Virginia-49 (SD = 30) and 12 minutes (SD = 4), respectively. Many pediatric hospice patients reside in isolated counties with long driving times from the nearest hospices. State-level policies should be developed to reduce driving times from hospice providers.

Characteristics and End-of-Life Care Pathways of Decedents From a National Cohort of Assisted Living Residents.

BACKGROUND: Assisted living (AL) is an increasingly common, place of care for dying persons. However, it remains unclear to what extent residents are able to age in place or if AL represents an additional transition before death. OBJECTIVES: Examine the sociodemographic characteristics, comorbidities, health care utilization, and end-of-life care pathways of AL residents before death. RESEARCH DESIGN: A national cohort study of fee-for-service Medicare beneficiaries residing in large AL communities (25+ beds) during the month of January 2017 with 3 years of follow-up, using administrative claims data. SUBJECTS: 268,812 AL residents. MEASURES: Sociodemographic characteristics, comorbidities, and health care utilization at the end of life. RESULTS: Between 2017 and 2019, 35.1% of the study cohort died. Decedents were more likely than the overall AL population to be 85 years old or older (76.5% vs. 59.5%), and diagnosed with Alzheimer's disease and related dementia (70.3% vs. 51.6%). Most decedents (96.2%) had some presence in AL during the last year of life, but over 1 in 5 left AL before the last month of life. Among those in AL on day 30 before death, nearly half (46.4%) died in place without any health care transition, while 13.2% had 3 or more transfers before dying. CONCLUSIONS: AL is an important place of care for dying persons, especially for those with dementia. These findings indicate a need to assess existing policies and processes guiding the care of the frail and vulnerable population of dying AL residents.

National- and State-Level Trends in Medicare Hospice Beneficiaries for Stroke During 2013 to 2019 in the United States.

BACKGROUND: Stroke is the fifth leading cause of death in the United States, one of the leading contributors to Medicare cost, including through Medicare hospice benefits, and the rate of stroke mortality has been increasing since 2013. We hypothesized that hospice utilization among Medicare beneficiaries with stroke has increased over time and that the increase is associated with trends in stroke death rate. METHODS: Using Medicare Part A claims data and Centers for Disease Control mortality data at a national and state level from 2013 to 2019, we report the proportion and count of Medicare hospice beneficiaries with stroke as well as the stroke death rate (per 100 000) in Medicare-eligible individuals aged ≥65 years. RESULTS: From 2013 to 2019, the number of Medicare hospice beneficiaries with stroke as their primary diagnosis increased 104.1% from 78 812 to 160 884. The number of stroke deaths in the United States in individuals aged ≥65 years also increased from 109 602 in 2013 to 129 193 in 2019 (17.9% increase). In 2013, stroke was the sixth most common primary diagnosis for Medicare hospice, while in 2019 it was the third most common, surpassed only by cancer and dementia. The correlation between the change from 2013 to 2019 in state-level Medicare hospice for stroke and stroke death rate for Medicare-eligible adults was significant (Spearman ρ=0.5; P<0.001). In a mixed-effects model, the variance in the state-level proportion of Medicare hospice for stroke explained by the state-level stroke death rate was 48.2%. CONCLUSIONS: From 2013 to 2019, the number of Medicare hospice beneficiaries with a primary diagnosis of stroke more than doubled and stroke jumped from the sixth most common indication for hospice to the third most common. While increases in stroke mortality in the Medicare-eligible population accounts for some of the increase of Medicare hospice beneficiaries, over half the variance remains unexplained and requires additional research.

Effects of Primary Care-Led, Integrated Palliative Care for Medicare Patients in a Value-Based Model.

CONTEXT: Faced with a projected shortage of specialized palliative care physicians, scalable palliative solutions are required to better meet the aging population's needs. OBJECTIVES: To determine whether a multi-site, primary care-led, integrated palliative care model improves clinical, utilization, and economic outcomes. METHODS: Propensity score-matched comparison group formed from participants who were Medicare beneficiaries, died January 1, 2021-January 31, 2023, were patients of eight primary care practices that partner with agilon health, and enrolled in palliative care for at least seven days. Each practice operates in a value-based model, where primary care providers (PCPs) take on full-risk for the cost and quality of patient outcomes. Each program includes symptom management, defining goals of care/advance directives, PCP care coordination, and assistance with care transitions if patients enroll in hospice. RESULTS: Final sample included 1778 decedents, with 889 in both enrolled and matched cohorts, average age 83. Palliative care is associated with improved patient outcomes from palliative care enrollment until death, including 5.4 more days at home (p < 0.001), 0.4 fewer hospitalizations (p < 0.001), 17% fewer deaths in a hospital (p < 0.001), and $10,393 lower overall healthcare costs (p < 0.001). CONCLUSION: A primary care-led, integrated approach of delivering palliative care within a full-risk model can be an effective care delivery mechanism to meet the healthcare needs of an aging population by impacting patient outcomes and reducing avoidable utilization and cost at the end of life. These findings demonstrate that PCPs in a scaled, full-risk model can simultaneously improve care for patients while reducing costs to the healthcare system.

Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

Development of a model and method for hospice quality assessment from natural language processing (NLP) analysis of online caregiver reviews.

OBJECTIVES: With a fraction of hospices having their Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores on Hospice Compare, a significant reservoir of hospice quality data remains in online caregiver reviews. The purpose of this study was to develop a method and model of hospice quality assessment from caregiver reviews using Watson's carative model. METHODS: Retrospective mixed methods of pilot qualitative thematic analysis and sentiment analysis using NLP of Google and Yelp caregiver reviews between 2013 and 2023. We employed stratified sampling, weighted according to hospice size, to emulate the daily census of enrollees across the United States. Sentiment analysis was performed (n = 3393) using Google NLP. RESULTS: Two themes with the highest prevalence had moderately positive sentiments (S): Caring staff (+.47) and Care quality, comfort and cleanliness (+.41). Other positive sentiment scores with high prevalence were Gratitude and thanks (+.81), "Treating the patient with respect" (+.54), and "Emotional, spiritual, bereavement support" (+.60). Lowest sentiment scores were "Insurance, administrative or billing" (-.37), "Lack of staffing" (-.32), and "Communication with the family" (-.01). SIGNIFICANCE OF RESULTS: In the developed quality model, caregivers recommended hospices with caring staff, providing quality care, responsive to requests, and offering family support, including bereavement care. All ten Watson's carative factors and all eight CAHPS measures were presented in the discovered review themes of the quality model. Close-ended CAHPS scores and open-ended online reviews have substantial conceptual overlap and complementary insights. Future hospice quality research should explore caregiver expectations and compare review themes by profit status.

Individual Socioeconomic Factors Have a Greater Impact on End-of-Life Care Outcomes Than Regional Factors.

Background: End-of-life (EoL) care provided to Americans in urban and rural settings is distinct in terms of both available and delivered services. However, much less is known about which geographic, demographic, and health indicators are associated with disparities in EoL care and how individual versus regional characteristics influence quality of care (QoC). Objective: This study aimed to assess how regionality, rurality, and individual socioeconomic factors are associated with QoC in the last month of life (LML). Design: Nationally representative cross-sectional study using the proxy-completed LML questionnaire as part of the National Health and Aging Trends Study (NHATS). The data were linked at the zip code level to geographic and economic indicators. Settings/Subjects: A total of 2778 NHATS enrollees who died from 2012 to 2020. Measurements: Measurements included population density, socioeconomic indicators, health factors, and health outcomes. The primary independent variable was proxy-reported QoC during the LML (excellent vs. not excellent). Results: In our sample, 52.1% (n = 1447) reported not excellent care and 47.9% (n = 1331) reported excellent care. These populations varied in their demographic and socioeconomic characteristics. After accounting for survey weighting and design, decedents in the top (odds ratio [OR]: 1.58; 95% confidence interval [CI]: 1.08-2.32) income quartile had significantly greater odds of receiving excellent care than decedents in the bottom quartile. Decedents in zip codes with top quartile health outcome metrics had significantly greater odds of receiving excellent care (OR: 1.64; 95% CI: 1.17-2.29) than decedents in zip codes with bottom quartile health outcomes. County rurality index and county health factors were not correlated with QoC in the LML. Conclusions: High QoC at the EoL may be more associated with individual socioeconomic factors than regional indicators, including degrees of rurality. Clinicians should strive to recognize the interplay of individual characteristics and regional indicators to provide more personalized care.

Association of Hospice Agency Location and Neighborhood Socioeconomic Disadvantage in the U.S.

BACKGROUND: Despite the growing increase in the utilization of hospice in the U.S, disparities exist in the utilization of hospice. Accumulating evidence has shown that neighborhood characteristics have an impact on availability of hospice agencies. OBJECTIVE: To assess the association between neighborhood social vulnerability and hospice agency availability. METHODS: Using the Medicare Post-Acute Care and Hospice Provider Utilization and Payment Public Use Files (PAC PUF) for 2019. Hospice agency addresses were geocoded to the census tract level. Multivariable Poisson regression models were used to assess the association between socioeconomic status SVI theme and hospice agency availability adjusting for number of home health agencies, primary care health profession shortage, per cent Black, and Percent Hispanic at the census tract level and rurality. RESULTS: The socioeconomic status SVI subtheme was associated with decreased likelihood of hospice agency availability (adjusted IRR (aIRR), .56; 95% CI, .50- .63; P < .001). Predominantly Black, and predominantly Hispanic neighborhoods had lower rates of hospice agency availability (aIRR, .48; 95% CI, .39-.59; P < .001 and aIRR, .29; 95% CI, .24-.36; P < .001), respectively. CONCLUSION: Neighborhood socioeconomic disadvantage was associated with lower availability of hospice agencies. Policies aimed at increasing access to hospice should be cognizant of neighborhood socioeconomic disadvantage.

Financial hardship for patients with cancer and caregivers at end of life in the USA: narrative review.

BACKGROUND: Patients and their families face financial hardship during cancer treatment, which may intensify at end of life (EOL) due to increased symptoms and care needs. We undertook a narrative literature review to describe the current understanding of the causes, impacts and factors associated with financial hardship at EOL. We identify gaps in research, policy and clinical practice and propose steps to mitigate financial hardship for patients and caregivers at EOL. METHODS: We conducted a Medline search to identify US studies since 2000 that examined EOL financial hardship for patients with cancer and their caregivers. RESULTS: Twenty-seven adult and four paediatric studies met review criteria. Adults with cancer and their caregivers face significant financial hardship at EOL and in bereavement, especially due to employment changes and informal caregiving time costs. Financial hardship may be higher for younger caregivers and for patients who are uninsured, low income, rural, with high symptom burdens or with certain cancer types. The few paediatric studies showed high financial hardship and employment impact lasting well beyond a child's death. CONCLUSIONS: There is limited literature examining financial hardship at EOL in the USA, especially in paediatrics. Priorities for future research include longitudinal studies in diverse populations of patients with cancer and informal caregivers using standardised financial hardship measures. Policies to address financial hardship at EOL, especially with hospice care, should include insurance coverage for family caregiving and medical leave policies. There is need for increased financial hardship screening at EOL and in bereavement and a need for financial navigation interventions.

Hospice Capacity to Provide General Inpatient Care: Emergency Department Utilization and Live Discharge Among Cancer Patients.

General inpatient (GIP) hospice care is used only minimally for hospice patients, and more than a quarter of Medicare hospice facilities do not provide GIP care. To determine the impact of hospices' capacity to provide on emergency department use during hospice enrollment and live discharge from hospice, we used Surveillance, Epidemiology, and End Results-Medicare linked data and CMS Provider of Services data from 2007 to 2013 from ten states and two metropolitan regions. Grouping hospices into three GIP care provision categories: 1) no-GIP; 2) GIP-contract; and 3) GIP-IHF where hospices directly provide GIP care in their own inpatient hospice facility (IHF), we built a multilevel logistic model that accounted for unobserved hospice characteristics. Nearly 9% of the study sample received GIP care, of which 82% received such care in the last week of discharge. GIP-IHF hospices had lower live discharge rates than no-GIP hospices (AOR: .61; 95% CI: .47-.79; P < .001) and GIP-contract hospices (AOR: .84; 95% CI: .70-1.00; P < .05). Similarly, GIP-contract hospices were also associated with a decreased risk of live discharge, compared to no-GIP hospices (AOR: .76; CI: .62-.92; P < .05). There was no difference in emergency department use between no-GIP hospices and hospices with such capacity. Our results suggest that hospices capable of providing GIP care have lower live discharge rates than their counterparts. However, the fact that GIP care tends to be provided too close to death limits its effectiveness in preventing avoidable emergency department use.

Racial and Ethnic Differences in Hospice Use Among Medicaid-Only and Dual-Eligible Decedents.

Importance: Hospice care enhances quality of life for people with terminal illness and is most beneficial with longer length of stay (LOS). Most hospice research focuses on the Medicare-insured population. Little is known about hospice use for the racially and ethnically diverse, low-income Medicaid population. Objective: To compare hospice use and hospice LOS by race and ethnicity among Medicaid-only individuals and those with dual eligibility for Medicare and Medicaid (duals) in the Connecticut Medicaid program who died over a 4-year period. Design, Setting, and Participants: This retrospective population-based cohort study used Medicaid and traditional Medicare enrollment and claims data for 2015 to 2020. The study included Connecticut Medicaid recipients with at least 1 of 5 most common hospice diagnoses who died from 2017 to 2020. Exposure: Race and ethnicity. Main Outcomes and Measures: Hospice use (yes/no) and hospice LOS (1-7 days vs ≥8 days.) Covariates included sex, age, and nursing facility stay within 60 days of death. Results: Overall, 2407 and 23 857 duals were included. Medicaid-only decedents were younger (13.8% ≥85 vs 52.5%), more likely to be male (50.6% vs 36.4%), more racially and ethnically diverse (48.7% non-Hispanic White vs 79.9%), and less likely to have a nursing facility stay (34.9% vs 56.1%). Race and ethnicity were significantly associated with hospice use and LOS in both populations: non-Hispanic Black and Hispanic decedents had lower odds of using hospice than non-Hispanic White decedents, and Hispanic decedents had higher odds of a short LOS. In both populations, older age and female sex were also associated with more hospice use. For duals only, higher age was associated with lower odds of short LOS. For decedents with nursing facility stays, compared with those without, Medicaid-only decedents had higher odds of using hospice (odds ratio [OR], 1.49; 95% CI, 1.24-1.78); duals had lower odds (OR, 0.60; 95% CI, 0.57-0.63). Compared with decedents without nursing facility stays, duals with a nursing facility stay had higher odds of short LOS (OR, 2.63; 95% CI, 2.43-2.85). Conclusions and Relevance: Findings raise concerns about equity and timing of access to hospice for Hispanic and non-Hispanic Black individuals in these understudied Medicaid populations. Knowledge about, access to, and acceptance of hospice may be lacking for these low-income individuals. Further research is needed to understand barriers to and facilitators of hospice use for people with nursing facility stays.