End-of-Life Health Care Service Use and Cost Among Medicare Decedents With Neurodegenerative Diseases.

BACKGROUND AND OBJECTIVES: Although neurodegenerative diseases are a leading cause of death, little is known about health care utilization and cost during the end-of-life (EoL) period or how it compares with that of other life-limiting conditions. We aimed to describe and compare resource utilization among US Medicare decedents with neurodegenerative diseases with decedents with cancer. METHODS: We conducted a retrospective study of Medicare Part A and B beneficiaries with Alzheimer disease (AD), Parkinson disease (PD), or amyotrophic lateral sclerosis (ALS) who died in 2018. Decedents diagnosed with malignant brain tumors or pancreatic cancer served as non-neurodegenerative comparators. Descriptive analyses examined demographic and clinical characteristics in the last year of life. The probabilities and associated costs of emergency department (ED), inpatient, skilled nursing facility (SNF), and hospice utilization during the last 12 and 6 months of life were also compared between persons with neurodegenerative diseases and cancer, adjusting for sociodemographic factors and comorbidity burden. RESULTS: A total of 1,126,799 Medicare beneficiaries died in 2018, of which 357,926 had a qualifying diagnosis. Persons with neurodegenerative diseases were older and more frequently received Medicaid assistance than persons with brain or pancreatic cancer. In all groups, health care service utilization increased over the last year of life, and total costs were predominantly attributable to inpatient care. In the last 6 months of life, neurologist care was infrequent among patients with neurodegenerative disease (AD: 1.5%; PD: 8.6%; ALS: 32.0%). Persons with neurodegenerative diseases as compared to persons with malignant brain tumors also had greater odds of ED use (AD: adjusted odds ratio [aOR] 1.17, 95% CI 1.11-1.23; PD: aOR 1.18, 95% CI 1.11-1.25; ALS: aOR 1.11, 95% CI 1.01-1.23), lower odds of hospitalization (AD: aOR 0.64, 95% CI 0.60-0.68; PD: aOR 0.65, 95% CI 0.61-0.69; ALS: aOR 0.33, 95% CI 0.30-0.37), and lower odds of hospice enrollment (AD: aOR 0.33, 95% CI 0.31-0.36; PD: aOR 0.33, 95% CI 0.31-0.36; ALS: aOR 0.41, 95% CI 0.36-0.46). The findings were similar in pancreatic cancer. DISCUSSION: Persons with neurodegenerative diseases in the United States are more likely to visit the ED and less likely to use inpatient and hospice services at EoL than persons with brain or pancreatic cancer. These group differences may stem from prognostic uncertainty and reflect inadequate EoL care practices, requiring further investigation to ensure more timely palliative care and hospice referrals.

Home Health Care and Place of Death in Medicare Beneficiaries With and Without Dementia.

BACKGROUND AND OBJECTIVES: Home health care supports patient goals for aging in place. Our objective was to determine if home health care use in the last 3 years of life reduces the risk of inpatient death without hospice. RESEARCH DESIGN AND METHODS: We analyzed the characteristics of 2,065,300 Medicare beneficiaries who died in 2019 and conducted multinomial logistic regression analyses to evaluate the association between the use and timing of home health care, dementia diagnosis, and place of death. RESULTS: Receiving any home health care in the last 3 years of life was associated with a lower probability of inpatient death without hospice (Pr 23.3% vs 31.5%, p < .001), and this effect was stronger when home health care began prior to versus during the last year of life (Pr 22.5% vs 24.3%, p < .001). Among all decedents, the probability of death at home with hospice compared to inpatient death with hospice was greater when any home health care was used (Pr 46.0% vs 36.5%, p < .001), and this association was strongest among beneficiaries with dementia who started home health care at least 1 year prior to death (Pr 55.6%, p < .001). DISCUSSION AND IMPLICATIONS: Use of home health care during the last 3 years of life was associated with reduced rates of inpatient death without hospice, and increased rates of home death with hospice. Increasing affordable access to home health care can positively affect end-of-life care outcomes for older Americans and their family caregivers, especially those with dementia.

Start of the COVID-19 Pandemic and Palliative Care Unit Utilization: A Retrospective Cohort Study.

CONTEXT: People with noncancer diagnoses have poorer access to palliative care units (PCUs) or hospices compared to those with cancer diagnoses. The COVID-19 pandemic disrupted how specialist palliative care services were delivered and utilized. OBJECTIVE: To determine the association between the start of the COVID-19 pandemic and PCU/hospice utilization in hospitalized individuals with cancer and noncancer diagnoses with specialist palliative care needs. METHODS: Retrospective cohort study using routinely collected data. Percentages of individuals experiencing each disposition from hospital, including discharge to PCU/hospice, were calculated monthly for the total, cancer, and noncancer cohorts and were analyzed descriptively. Hospitalized individuals with specialist palliative care needs at a single academic hospital in Toronto, Canada from January 1, 2017, to September 31, 2022 (pandemic start was defined as April 1, 2020). RESULTS: The cohort comprised 4349 individuals (median age=78 years; 52.4% female); 3065 (70.5%) and 1284 (29.5%) had cancer and noncancer diagnoses, respectively. Among individuals with noncancer diagnoses, the most significant absolute changes were a 13.0%-decrease in in-hospital deaths (prepandemic=49.6%; postpandemic=36.6%) and a 11.6%-increase in discharges to PCU/hospice (prepandemic=35.6%; postpandemic=47.3%). Among individuals with cancer, the most significant absolute changes were a 12.8%-increase in discharges home with formal care (prepandemic=2.3%; postpandemic=15.1%) and a 7.0%-decrease in in-hospital deaths (prepandemic=29.1%; postpandemic=22.0%). CONCLUSION: Despite historically poor PCU/hospice access, the COVID-19 pandemic created circumstances that may have enabled unprecedented utilization in individuals with noncancer diagnoses in our cohort.

Differences in End-of-Life Care Between Patients Who Died of Cancer Diseases and Those Who Died of Noncancer Diseases.

Background and Purpose: Patients with advanced noncancer diseases or advanced cancer diseases may experience similar symptom burdens during the end of their lives. This study aimed to evaluate the differences in receiving hospice care service and in receiving aggressive end-of-life care between patients who died of cancer diseases and those who died of noncancer diseases. Methods: This cross-sectional population-based study used data from the Taiwan National Health Insurance Research Database. Subjects who died of cancers or noncancer diseases from 2010 through 2019 were analyzed to identify the information on patient's characteristics, receipt of hospice care service, receipt of cardiopulmonary resuscitation (CPR) during the last hospitalization, and receipt of airway support interventions during the last hospitalization. The independent effects of various characteristics on the receipt of hospice care, CPR during the last hospitalization, and airway support interventions during the last hospitalization were evaluated using multivariate logistic regressions. Results: A total of 587,490 patients were included, of which 434,142 died of cancers and 153,348 died of noncancer diseases. There were significant trends of increase in receiving hospice care service and significant trends of decrease in receiving CPR or airway support interventions during the last hospitalization in both patients who died of cancers and those who died of noncancer diseases. Compared with patients who died of cancers, those who died of noncancer diseases were less likely to receive hospice care service (adjusted odds ratio [AOR]: 0.087; 95% confidence interval [CI]: 0.085-0.089) and had a higher risk of receiving CPR (AOR: 3.610; 95% CI: 3.521-3.704) or airway support interventions during the last hospitalization (AOR: 3.086; 95% CI: 3.021-3.165). Conclusions: Hospice care service should be promoted for all patients with end-stage diseases especially those with noncancer diseases.

Hospice Enrollment and Central Nervous System-Active Medication Prescribing to Medicare Decedents with Dementia.

This study explores the extent to which hospice enrollment is associated with CNS­active medication exposure among Medicare decedents with Alzheimer disease and related dementias.

Forecasting the need for palliative and hospice care using the creeping trend method with segment smoothing.

OBJECTIVE: Aim: To determine the limits of refinement of the forecast of the need for palliative and hospice care (PHC) among adults and children, made by the methods of linear, logarithmic and exponential trends, using the improved forecasting method. PATIENTS AND METHODS: Materials and Methods: Based on the calculated demand for 2018-2020, a demand forecast was made using the linear trend method for 2021 and 2022, which was verified by comparing it with the calculation based on available statistical data for 2022. To improve the forecasting result, the creeping trend method with a smoothing segment was used. RESULTS: Results: The estimated need for PHC by the linear trend method for 2022 was 87,254 adults and 46,122 children. The predicted need for this year by the linear trend method was 172,303 for adults and 45,517 for children. The prediction using the sliding trend method with segment smoothing was found to be 4.7 times more accurate and reliable for adults and all age groups combined, but was less accurate and not reliable for children. It was found out that in order to achieve a reliable forecast, it is necessary to clarify the data of medical statistics regarding of malignant neoplasms and congenital malformations, as well as demographic statistics. CONCLUSION: Conclusions: The method of a creeping trend gave more accurate results and made it possible to determine the reliability of the forecast, allowed to take into account the simultaneous influence of various input parameters.

A Hospice Transitions Program for Patients in the Emergency Department.

Importance: Patients often visit the emergency department (ED) near the end of life. Their common disposition is inpatient hospital admission, which can result in a delayed transition to hospice care and, ultimately, an inpatient hospital death that may be misaligned with their goals of care. Objective: To assess the association of hospice use with a novel multidisciplinary hospice program to rapidly identify and enroll eligible patients presenting to the ED near end of life. Design, Setting, and Participants: This pre-post quality improvement study of a novel, multifaceted care transitions program involving a formalized pathway with email alerts, clinician training, hospice vendor expansion, metric creation, and data tracking was conducted at a large, urban tertiary care academic medical center affiliated with a comprehensive cancer center among adult patients presenting to the ED near the end of life. The control period before program launch was from September 1, 2018, to January 31, 2020, and the intervention period after program launch was from August 1, 2021, to December 31, 2022. Main Outcome and Measures: The primary outcome was a transition to hospice without hospital admission and/or hospice admission within 96 hours of the ED visit. Secondary outcomes included length of stay and in-hospital mortality. Results: This study included 270 patients (median age, 74.0 years [IQR, 62.0-85.0 years]; 133 of 270 women [49.3%]) in the control period, and 388 patients (median age, 73.0 years [IQR, 60.0-84.0 years]; 208 of 388 women [53.6%]) in the intervention period, identified as eligible for hospice transition within 96 hours of ED arrival. In the control period, 61 patients (22.6%) achieved the primary outcome compared with 210 patients (54.1%) in the intervention period (P < .001). The intervention was associated with the primary outcome after adjustment for age, race and ethnicity, primary payer, Charlson Comorbidity Index, and presence of a Medical Order for Life-Sustaining Treatment (MOLST) (adjusted odds ratio, 5.02; 95% CI, 3.17-7.94). In addition, the presence of a MOLST was independently associated with hospice transition across all groups (adjusted odds ratio, 1.88; 95% CI, 1.18-2.99). There was no significant difference between the control and intervention periods in inpatient length of stay (median, 2.0 days [IQR, 1.1-3.0 days] vs 1.9 days [IQR, 1.1-3.0 days]; P = .84), but in-hospital mortality was lower in the intervention period (48.5% [188 of 388] vs 64.4% [174 of 270]; P < .001). Conclusions and Relevance: In this quality improvement study, a multidisciplinary program to facilitate ED patient transitions was associated with hospice use. Further investigation is needed to examine the generalizability and sustainability of the program.

Medicare-Covered Services Near the End of Life in Medicare Advantage vs Traditional Medicare.

Importance: Financial incentives in Medicare Advantage (MA), the managed care alternative to traditional Medicare (TM), were designed to reduce overutilization. For patients near the end of life (EOL), MA incentives may reduce potentially burdensome care and encourage hospice but could also restrict access to costly but necessary services. Objective: To compare receipt of potentially burdensome treatments and transfers and potentially necessary postacute services in the last 6 months of life in individuals with MA vs TM. Design, Setting, and Participants: A retrospective analysis of Medicare claims data among older Medicare beneficiaries who died between 2016 and 2018. The study included Medicare decedents aged 66 years or older covered by TM (n = 659 135) or MA (n = 360 430). All decedents and the subset of decedents with 1 or more emergent hospitalizations with a life-limiting condition (cancer, dementia, end-stage organ failure) that would likely qualify for hospice care were included. Exposure: MA enrollment. Main Outcomes: Receipt of potentially burdensome hospitalizations and treatments; receipt of postdischarge home and facility care. Results: The study included 659 135 TM enrollees (mean [SD] age at death, 83.3 [9.0] years, 54% female, 15.1% non-White, 55% with 1 or more life-limiting condition) and 360 430 MA enrollees (mean [SD] age at death 82.5 [8.7] years, 53% female, 19.3% non-White, 49% with 1 or more life-limiting condition). After regression adjustment, MA enrollees were less likely to receive potentially burdensome treatments (-1.6 percentage points (pp); 95% CI, -2.1 to -1.1) and less likely to die in a hospital (-3.3 pp; 95% CI, -4.0 to -2.7) compared with TM. However, when hospitalized, MA enrollees were more likely to die in the hospital (adjusted difference, 1.3 pp; 95% CI, 1.1-1.5) and less likely to be transferred to rehabilitative or skilled nursing facilities (-5.2 pp; 95% CI, -5.7 to -4.6). Higher rates of home health and home hospice among those discharged home offset half of the decline in facility use. Results were unchanged in the life-limiting conditions sample. Conclusions: MA enrollment was associated with lower rates of potentially burdensome and facility-based care near the EOL. Greater use of home-based care may improve quality of care but may also leave patients without adequate assistance after hospitalization.

Dementia patients in palliative care according to data from the German National Hospice and Palliative Care Register (2009-2021).

BACKGROUND: People with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking. AIM: To explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis. DESIGN: We conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation. SETTING/PARTICIPANTS: We limited the analysis to the subsample of people aged over 64. RESULTS: The prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home. CONCLUSIONS: The records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients' principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it. TRIAL REGISTRATION: No registration.

Influencing factors of home hospice care needs of the older adults with chronic diseases at the end of life in China: a cross-sectional study.

Introduction: Chronic diseases are becoming a serious threat to the physical and mental health of older people in China as their aging process picks up speed. Home hospice care addresses diverse needs and enhances the quality of life for older adult individuals nearing the end of life. To ensure the well-being of chronically ill older adults at the end of life, it is vital to explore and assess the multidimensional hospice needs of terminally ill older individuals in their homes. The aim of this study was to investigate the current situation of home hospice care needs of Chinese older adults with chronic diseases at the end of life, and to analyze the influencing factors (sociodemographic and disease-related factors). Methods: In this cross-sectional study, 247 older adult people with chronic diseases at the end of life were selected from the communities of 4 community health service centers in Jinzhou City, Liaoning Province from June to October 2023 by random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Independent samples t-test or one-way ANOVA was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. Results: The total score of home hospice needs of the dying older adult was 115.70 ± 12, with the mean scores for each dimension in descending order being Information Needs (3.96 ± 0.61), Social Support Needs (3.96 ± 0.44), Spiritual Needs (3.92 ± 0.43), Physical Needs (3.60 ± 0.59), Psychological Needs (3.37 ± 0.65). Status of residence, duration of illness (year), the type of disease, and self-care ability were influential factors in the total score of home hospice needs. Discussion: The need for hospice care for the terminally ill older adult is high, and healthcare professionals should implement services according to the influencing factors of need to meet their multidimensional needs and improve their quality of life.

Association Between Patient Portal Activities and End-of-Life Outcomes Among Deceased Patients in the Last 12 Months of Life.

Objective: The objective of this study was to examine the association between portal use and end-of-life (EOL) outcomes in the last year of life. Methods: A retrospective cohort (n = 6,517) study at Kaiser Permanente Colorado among adults with serious illness deceased between January 1, 2016, and June 30, 2019. Portal use was categorized into engagement types: no use, nonactive, active without a provider, and active with a provider. EOL outcomes were hospitalizations in the month before death, last-year advance directive completion, and hospice use. Association between EOL outcomes and levels of portal use was assessed using χ2 statistics and generalized linear models. Results: Higher portal engagement types were associated with higher rates of hospitalizations (p = 0.0492), advance directive completion (p = 0.0226), and hospice use (p = 0.0070). Conclusion: Portal use in the last year of life was associated with increases in a poor EOL outcome, hospitalizations, and beneficial EOL outcomes, advance directives, and hospice care.

Hospice Coding and Data Conventions Contribute to Oversimplify the Presence of Dementia in Hospice.

OBJECTIVES: To document how dementia diagnoses appear in hospice claims, and how these different presentations reflect different hospice utilization. The reliance in the hospice literature on primary diagnosis, in addition to the focus on decedents, may underestimate the true presence of dementia in hospice, and little is known about the health care utilization of hospice patients with dementia as a secondary or not present diagnosis. DESIGN: Secondary data analysis of Medicare claims. SETTING AND PARTICIPANTS: Medicare beneficiaries with 2 or more dementia diagnoses from 2016 to 2018 electing hospice in 2018. METHODS: Beneficiaries were classified based on the presence and position of dementia on their subset of hospice claims: primary diagnosis, secondary diagnosis, and not present. We then compared the demographics and utilization of the 3 claim-based categories of dementia beneficiaries in hospice in 2018. RESULTS: Fewer than half of beneficiaries with a dementia diagnosis in all of their Medicare claims have dementia indicated as the primary diagnosis associated with their hospice claims, and 30% of beneficiaries did not have their diagnosed dementia appear at all on their hospice claims. Hospice length of stay and other utilization characteristics varied markedly across the 3 claim-based categories of dementia beneficiaries in hospice in 2018. CONCLUSIONS AND IMPLICATIONS: Collectively, International Classification of Diseases, Tenth Revision (ICD-10) coding and sequencing conventions, coding practices, and research methods related to hospice claim diagnoses may unintentionally underestimate and oversimplify how dementia manifests in hospice utilization.

Early palliative care program in idiopathic pulmonary fibrosis patients favors at-home and hospice deaths, reduces unplanned medical visits, and prolongs survival: A pilot study.

BACKGROUND: Idiopathic Pulmonary Fibrosis (IPF) is a lethal disease; most patients die in hospitals because palliative care (PC) is not wildly and early available. We aimed to determine the impact of an early PC program in IPF patients on place of death, emergency department (ED) admission, unplanned medical visits and survival before and after its implementation at our clinic. METHODS: IPF patients from our ILD clinic who died between January 1st, 2018 and December 31th, 2023 were included in the analysis. Primary outcomes were location of death, number of ED access and unplanned medical visits; secondary outcomes was survival from diagnosis. RESULTS: A total of 46 decedents between 2018 and 2023 were analysed: (median age 71,5 ± 5,5 years, 89 % male): 26 died before the implementation of the early PC program and 20 after. Through χ2 test, location of death resulted significantly different in the two groups, showing the capacity of early PC to favor at home or in hospice death (p = 0,02); similarly, the number of unplanned visits was significantly lower (p = 0,03). Finally, survival was significantly lower in patients not receiving the early PC program (p = 0,01). CONCLUSION: The availability of an early PC program since the diagnosis significantly reduced both the death rate in hospital settings, favoring dying in hospice or at home, and the number of unplanned medical visits. Furthermore, IPF patients receiving early PC showed a longer survival than those who did not.

An Age Group Comparison of Concurrent Hospice Care: A Cost-Effectiveness Analysis.

This study aimed to examine the cost-effectiveness of concurrent hospice care compared with standard care among pediatric patients of different age groups. Using a national Medicaid database of 18 152 pediatric patients enrolled in hospice care between 2011 and 2013, this study calculated and analyzed incremental cost-effectiveness ratios (ICERs) for concurrent care versus standard hospice care for children of 4 age categories: <1 year, 1 to 5 years, 6 to 14 years, and 15 to 20 years. The results indicated that the total Medicaid cost of hospice care was $3229 per patient per month (PPPM; SD, $8709) for those younger than 1 year, $4793 PPPM (SD, $8178) for those aged 1 to 5 years, $5411 PPPM (SD, $7456) for those aged 6 to 14 years, and $5625 PPPM (SD, $11459) for those aged 15 to 20 years. Incremental cost-effectiveness ratio values across all age groups showed that children enrolled in concurrent care had fewer live discharges but at a higher Medicaid cost of care as compared with those enrolled in standard hospice care. Concurrent hospice care was the most cost-effective in the age groups of <1 year and 1 to 5 years, with ICERs equal to $45 (95% confidence interval [CI], $23-$66) and $49 (95% CI, $8-$76), respectively. For the other older age groups, benefits of enrollment in concurrent care came at a much higher cost: in the age group of 6 to 14 years, ICER was equal to $217 (95% CI, $129-$217), and in the age group of 15 to 20 years, it was $107 (95% CI, $82-$183). Concurrent hospice is an effective way to reduce live discharges but has a higher total Medicaid cost than standard hospice care.

Influencing factors of home hospice care needs of family caregivers of the older adult with chronic diseases at the end of life in China: a cross-sectional study.

Introduction: With increased life expectancy in the Chinese population coupled with chronic disease the care needs of people at the end of life are attracting much attention. Home hospice care can help the dying older adult achieve comfort and maintain their dignity at home. However, dying at home means great responsibility and challenge for family caregivers, and there are many unmet needs. The study aimed to investigate the home hospice care needs of family caregivers of older adult people with chronic diseases at the end of life in China, and to analyze the influencing factors of home hospice care needs of caregivers. Methods: In this cross-sectional study, from May to September 2023, 4 community health service centers were selected by stratified sampling from seven administrative districts in Jinzhou City, Liaoning Province, where home hospice care was piloted. Then 224 family caregivers were selected from the communities of seven community service centers by simple random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Univariate analysis was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. Results: The total score of hospice care needs of family caregivers was 121.61 ± 15.24, among which the end-of-life knowledge need dimension score was 24.04 ± 2.71, the highest score index was 80.13%, while the symptom control need score was 15.58 ± 3.39, the lowest score index was 62.32%. In addition, Caregivers with caregiving experience, dying older adult with longer disease duration, and dying older adult with higher levels of education were the factors influencing the total need for home hospice care among family caregivers, with a variance explained of 22.7%. Discussion: The needs of family caregivers of the terminally ill older adult are high, and healthcare professionals should implement services to meet their multidimensional needs and improve the quality of care according to the factors affecting their needs.

Hospice Readmission, Hospitalization, and Hospital Death Among Patients Discharged Alive from Hospice.

Importance: Transitions in care settings following live discharge from hospice care are burdensome for patients and families. Factors contributing to risk of burdensome transitions following hospice discharge are understudied. Objective: To identify factors associated with 2 burdensome transitions following hospice live discharge, as defined by the Centers for Medicare & Medicaid Services. Design, Setting, and Participants: This population-based retrospective cohort study included a 20% random sample of Medicare fee-for-service beneficiaries using 2014 to 2019 Medicare claims data. Data were analyzed from April 22, 2023, to March 4, 2024. Exposure: Live hospice discharge. Main Outcomes and Measures: Multivariable logistic regression examined associations among patient, health care provision, and organizational characteristics with 2 burdensome transitions after live hospice discharge (outcomes): type 1, hospice discharge, hospitalization within 2 days, and hospice readmission within 2 days; and type 2, hospice discharge, hospitalization within 2 days, and hospital death. Results: This study included 115 072 Medicare beneficiaries discharged alive from hospice (mean [SD] age, 84.4 [6.6] years; 71892 [62.5%] female; 5462 [4.8%] Hispanic, 9822 [8.5%] non-Hispanic Black, and 96 115 [83.5%] non-Hispanic White). Overall, 10 381 individuals (9.0%) experienced a type 1 burdensome transition and 3144 individuals (2.7%) experienced a type 2 burdensome transition. In adjusted models, factors associated with higher odds of burdensome transitions included identifying as non-Hispanic Black (type 1: adjusted odds ratio [aOR], 1.47; 95% CI, 1.36-1.58; type 2: aOR, 1.70; 95% CI, 1.51-1.90), hospice stays of 7 days or fewer (type 1: aOR, 1.13; 95% CI, 1.06-1.21; type 2: aOR, 1.71; 95% CI, 1.53-1.90), and care from a for-profit hospice (type 1: aOR, 1.78; 95% CI, 1.62-1.96; type 2: aOR, 1.32; 95% CI, 1.15-1.52). Nursing home residence (type 1: aOR, 0.66; 95% CI, 0.61-0.72; type 2: aOR, 0.47; 95% CI, 0.40-0.54) and hospice stays of 180 days or longer (type 1: aOR, 0.63; 95% CI, 0.59-0.68; type 2: aOR, 0.60; 95% CI, 0.52-0.69) were associated with lower odds of burdensome transitions. Conclusion and Relevance: This retrospective cohort study of burdensome transitions following live hospice discharge found that non-Hispanic Black race, short hospice stays, and care from for-profit hospices were associated with higher odds of experiencing a burdensome transition. These findings suggest that changes to clinical practice and policy may reduce the risk of burdensome transitions, such as hospice discharge planning that is incentivized, systematically applied, and tailored to needs of patients at greater risk for burdensome transitions.

Variation in Hospice Aide Care by Residential Setting.

Background: Hospice care frequently includes hands-on care from hospice aides, but the need for hospice aide care may vary in residential settings (e.g., assisted livings and nursing homes). Objectives: The objective of this study is to compare hospice aide use and factors associated with use across residential settings. Design: This longitudinal cohort study used data from Medicare beneficiaries in the United States enrolled in the Medicare Current Beneficiary Survey (MCBS) who died between 2010 and 2019 and had hospice claims and available residential setting data in MCBS (n = 1,915). Analysis: Decedent hospice aide use was compared by residential settings; multivariable models controlling for sociodemographic, clinical/functional, and hospice characteristics examined factors associated with hospice aide care in different residential settings. Results: Hospice aide visits were least common in the community setting (64.4% vs. 76.6% vs. 72.6% with any hospice aide visits in community, assisted living, and nursing home, respectively, p = 0.001). In adjusted models, factors associated with hospice aide visits did not significantly differ by residential settings. Conclusions: Despite staff providing hands-on support in assisted livings and nursing homes, hospice aide visits were more common in residential as opposed to community settings, and factors associated with hospice aide visits were similar among settings. To maximize the potentially positive impact of hospice aides on overall care, additional work is needed to understand when hospice aides are used and how hospice aides collaborate with families and care teams. This will help to ensure that hospice care is appropriately tailored to individual care needs in all residential settings.

Differences in end-of-life care patterns between types of hospice used for cancer patients: a retrospective cohort study.

BACKGROUND: In response to the rapid aging population and increasing number of cancer patients, discussions on dignified end-of-life (EoL) decisions are active around the world. Therefore, this study aimed to identify the differences in EoL care patterns between types of hospice used for cancer patients. METHODS: In this population-based cohort study, the Korean National Health Insurance Service cohort data containing all registered cancer patients who died between 2017 and 2021 were used. A total of 408,964 individuals were eligible for analysis. The variable of interest, the type of hospice used in the 6 months before death, was classified as follows: (1) Non-hospice users; (2) Hospital-based hospice single users; (3) Home-based hospice single users; (4) Combined hospice users. The outcomes were set as patterns of care, including intense care and supportive care. To identify differences in care patterns between hospice types, a generalized linear model with zero-inflated negative binomial distribution was applied. RESULTS: Hospice enrollment was associated with less intense care and more supportive care near death. Notably, those who used combined hospice care had the lowest probability and frequency of receiving intense care (aOR: 0.18, 95% CI: 0.17-0.19, aRR: 0.47, 95% CI: 0.44-0.49), while home-based hospice single users had the highest probability and frequency of receiving supportive care (Prescription for narcotic analgesics, aOR: 2.95, 95% CI: 2.69-3.23, aRR: 1.45, 95% CI: 1.41-1.49; Mental health care, aOR: 3.40, 95% CI: 3.13-3.69, aRR: 1.35, 95% CI: 1.31-1.39). CONCLUSION: Our findings suggest that although intense care for life-sustaining decreases with hospice enrollment, QoL at the EoL actually improves with appropriate supportive care. This study is meaningful in that it not only offers valuable insight into hospice care for terminally ill patients, but also provides policy implications for the introduction of patient-centered community-based hospice services.

Do end-of-life outcomes differ by assisted living memory-care designation?

BACKGROUND: Residential care/assisted living (RC/AL) is an increasingly common place of end-of-life care for persons with Alzheimer's disease and related dementia (ADRD), who have unique care needs as their health declines. Approximately 22% of RC/ALs provide specialized memory care (memory-care RC/AL). Understanding how end-of-life outcomes differ by memory care among residents with ADRD could facilitate aging/dying in place for this population. The objective of this paper is to examine if end-of-life outcomes (i.e., mortality, hospice use, and number of days receiving hospice in the last month of life) differ between residents with ADRD who moved to memory-care RC/AL, compared with residents with ADRD who moved to RC/AL without memory care (general RC/AL). METHODS: Prospective cohort of 15,152 fee-for-service Medicare beneficiaries with ADRD who moved to large RC/AL (> = 25 beds) between 2016 and 2018. We used inverse probability treatment weighting to account for observable differences between memory-care and general RC/AL residents. Two-part models estimated the difference by memory care in the number of days receiving hospice care in the last months of life among RC/AL decedents. RESULTS: The unadjusted mortality rates were 13.4% in general RC/AL and 15.8% in memory-care RC/AL with an adjusted difference of 1.3 percentage points higher mortality among memory-care RC/AL residents (p = 0.04). Hospice use was 8% and 10.6% among general and memory-care RC/AL residents, respectively, with an adjusted difference of 1.4 percentage points (p = 0.01) higher in memory care. Two-part models showed that decedents in memory-care RC/AL spent about 1.4 more days receiving hospice care in the last month of life (p = 0.02). CONCLUSION: We find a higher mortality rate and higher rate of hospice use among memory-care RC/AL residents. These findings suggest that memory care may attract residents closer to the end of life and/or promote hospice use at the end of life.

Mortality risk following end-of-life caregiving: A population-based analysis of hospice users and their families.

Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.