Perspectives on Transfusions for Hospice Patients With Blood Cancers: A Survey of Hospice Providers.

CONTEXT: Patients with blood cancers have low rates of hospice use. While lack of transfusion access in hospice is posited to substantially contribute to these low rates, little is known about the perspectives of hospice providers regarding transfusion access in hospice. OBJECTIVES: To characterize hospice providers' perspectives regarding care for patients with blood cancers and transfusions in the hospice setting. METHODS: In 2022, we conducted a cross-sectional survey of a sample of hospices in the United States regarding their experience caring for patients with blood cancers, perceived barriers to hospice use, and interventions to increase enrollment. RESULTS: We received 113 completed surveys (response rate = 23.5%). Of the cohort, 2.7% reported that their agency always offers transfusions, 40.7% reported sometimes offering transfusions, and 54.9% reported never offering transfusions. In multivariable analyses, factors associated with offering transfusions included nonprofit ownership (OR 5.93, 95% CI, 2.2-15.2) and daily census >50 patients (OR 3.06, 95% CI, 1.19-7.87). Most respondents (76.6%) identified lack of transfusion access in hospice as a barrier to hospice enrollment for blood cancer patients. The top intervention considered as "very helpful" for increasing enrollment was additional reimbursement for transfusions (72.1%). CONCLUSION: In this national sample of hospices, access to palliative transfusions was severely limited and was considered a significant barrier to hospice use for blood cancer patients. Moreover, hospices felt increased reimbursement for transfusions would be an important intervention. These data suggest that hospice providers are supportive of increasing transfusion access and highlight the critical need for innovative hospice payment models to improve end-of-life care for patients with blood cancers.

Health Care Costs Associated With Hospice Use For People With Dementia In The US.

Policy makers in the US are increasingly concerned that greater use of the Medicare hospice benefit by people with dementia is driving up costs. Yet this perspective fails to incorporate potential cost savings associated with hospice. We estimated the association between hospice use by people with dementia and health care costs, using Medicare Current Beneficiary Survey data from the period 2002-19. For community-dwelling people with dementia, Medicare costs were lower for those who used hospice than for those who did not, whether hospice enrollment was in the last three days ($2,200) or last three months ($7,200) of life, primarily through lower inpatient care costs in the last days of life. In nursing homes, total and Medicare costs were lower for hospice users with dementia who enrolled within a month of death than for those who did not use hospice. Total costs for the entire last year of life for those who used any days of hospice in the last year compared with no hospice did not differ, although Medicare costs were higher and Medicaid costs lower for those in nursing homes. Medicare policies that reduce hospice access and incentivize hospice disenrollment may actually increase Medicare costs, given that hospice cost savings generally derive from a person's last days or weeks of life.

Hospice Quality, Race, and Disenrollment in Hospice Enrollees With Dementia.

Background: Racial and ethnic minoritized people with dementia (PWD) are at high risk of disenrollment from hospice, yet little is known about the relationship between hospice quality and racial disparities in disenrollment among PWD. Objective: To assess the association between race and disenrollment between and within hospice quality categories in PWD. Design/Setting/Subjects: Retrospective cohort study of 100% Medicare beneficiaries 65+ enrolled in hospice with a principal diagnosis of dementia, July 2012-December 2017. Race and ethnicity (White/Black/Hispanic/Asian and Pacific Islander [AAPI]) was assessed with the Research Triangle Institute (RTI) algorithm. Hospice quality was assessed with the publicly-available Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey item on overall hospice rating, including a category for hospices exempt from public reporting (unrated). Results: The sample included 673,102 PWD (mean age 86, 66% female, 85% White, 7.3% Black, 6.3% Hispanic, 1.6% AAPI) enrolled in 4371 hospices nationwide. Likelihood of disenrollment was higher in hospices in the lowest quartile of quality ratings (vs. highest quartile) for both White (adjusted odds ratio [AOR] 1.12 [95% confidence interval 1.06-1.19]) and minoritized PWD (AOR range 1.2-1.3) and was substantially higher in unrated hospices (AOR range 1.8-2.0). Within both low- and high-quality hospices, minoritized PWD were more likely to be disenrolled compared with White PWD (AOR range 1.18-1.45). Conclusions: Hospice quality predicts disenrollment, but does not fully explain disparities in disenrollment for minoritized PWD. Efforts to improve racial equity in hospice should focus both on increasing equity in access to high-quality hospices and improving care for racial minoritized PWD in all hospices.

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

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

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

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

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

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

Disruptions in Home Hospice Care due to the COVID-19 Pandemic.

Background: There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic. Objective: To describe the challenges of home hospice care and the specific types of disruptions in care processes experienced by patients and families. Design: Qualitative study of the electronic medical record notes of a large New York City (NYC) home-based primary care program. Setting/Subjects: Subjects were 58 patients referred to hospice who died during the initial NYC COVID-19 surge from March to June 2020. Results: We identified six domains of disruptions in home hospice care: delayed hospice enrollment, inability to conduct home visits, lack of needed supplies, communication failures, strained caregivers, and limitations of telehealth. Conclusions: This study provides a critical first analysis of disruptions in home hospice care that can feasibly be addressed and must be prioritized by hospices throughout the ongoing pandemic and in advance of future emergencies.

Care Disruptions and End-Of-Life Care Experiences Among Home-Based Primary Care Patients During the COVID-19 Pandemic in New York City: A Retrospective Chart Review.

Background: Research on deaths during COVID-19 has largely focused on hospitals and nursing homes. Less is known about medically complex patients receiving care in the community. We examined care disruptions and end-of-life experiences of homebound patients receiving home-based primary care (HBPC) in New York City during the initial 2020 COVID-19 surge. Methods: We conducted a retrospective chart review of patients enrolled in Mount Sinai Visiting Doctors who died between March 1-June 30, 2020. We collected patient sociodemographic and clinical data and analyzed care disruptions and end-of-life experiences using clinical notes, informed by thematic and narrative analysis. Results: Among 1300 homebound patients, 112 (9%) died during the study period. Patients who died were more likely to be older, non-Hispanic white, and have dementia than those who survived. Thirty percent of decedents had confirmed or probable COVID-19. Fifty-eight (52%) were referred to hospice and 50 enrolled. Seventy-three percent died at home. We identified multiple intersecting disruptions in family caregiving, paid caregiving, medical supplies and services, and hospice care, as well as hospital avoidance, complicating EOL experiences. The HBPC team responded by providing clinical, logistical and emotional support to patients and families. Conclusion: Despite substantial care disruptions, the majority of patients in our study died at home with support from their HBPC team as the practice worked to manage care disruptions. Our findings suggest HBPC's multi-disciplinary, team-based model may be uniquely suited to meet the needs of the most medically and socially vulnerable older adults at end of life during public health emergencies.

Association Between Hospice Enrollment and Total Health Care Costs for Insurers and Families, 2002-2018.

Importance: Use of hospice has been demonstrated to be cost saving to the Medicare program and yet the extent to which hospice saves money across all payers, including whether it shifts costs to families, is unknown. Objective: To estimate the association between hospice use and total health care costs including family out-of-pocket health care spending. Design Setting and Participants: This retrospective cohort study of health care spending in the last 6 months of life used data from the nationally representative Medicare Current Beneficiary Survey (MCBS) between the years 2002 and 2018. Participants were MCBS participants who resided in the community and died between 2002 and 2018. Exposures: Covariate balancing propensity scores were used to compare participants who used hospice (n = 2113) and those who did not (n = 3351), stratified by duration of hospice use. Main Outcomes and Measures: Total health care expenditures were measured across payers (family out-of-pocket, Medicare, Medicare Advantage, Medicaid, private insurance, private health maintenance organizations, Veteran's Administration, and other) and by expenditure type (inpatient care, outpatient care, medical visits, skilled nursing, home health, hospice, durable medical equipment, and prescription drugs). Results: The study population included 5464 decedents (mean age 78.7 years; 48% female) and 38% enrolled with hospice. Total health care expenditures were lower for those who used hospice compared with propensity score weighted non-hospice control participants for the last 3 days of life ($2813 lower; 95% CI, $2396-$3230); last week of life ($6806 lower; 95% CI, $6261-$7350); last 2 weeks of life ($8785 lower; 95% CI, $7971-$9600); last month of life ($11 747 lower; 95% CI, $10 072-$13 422); and last 3 months of life ($10 908 lower; 95% CI, $7283-$14 533). Family out-of-pocket expenditures were lower for hospice enrollees in the last 3 days of life ($71; 95% CI, $43-$100); last week of life ($216; 95% CI, $175-$256); last 2 weeks of life ($265; 95% CI, $149-$382); and last month of life ($670; 95% CI, $530-$811) compared with those who did not use hospice. Health care savings were associated with reductions in inpatient care. Conclusions and Relevance: In this population-based cohort study of community-dwelling Medicare beneficiaries, hospice enrollment was associated with lower total health care costs for the last 3 days to 3 months of life. Importantly, we found no evidence of cost shifting from Medicare to families related to hospice enrollment. The magnitude of lower out-of-pocket spending to families who enrolled with hospice is meaningful to many Americans, particularly those with lower socioeconomic status.

A national study of disenrollment from hospice among people with dementia.

BACKGROUND: People with dementia (PWD) are at high risk for hospice disenrollment, yet little is known about patterns of disenrollment among the growing number of hospice enrollees with dementia. DESIGN: Retrospective, observational cohort study of 100% Medicare beneficiaries with dementia aged 65 and older enrolled in the Medicare Hospice Benefit between July 2012 and December 2017. Outcome measures included hospice-initiated disenrollment for patients whose rate of decline ceased to meet the Medicare hospice eligibility guideline of "expected death within 6 months" (extended prognosis) and patient-initiated disenrollment (revocation). Hospice, regional, and patient risk factors and variation were assessed with multilevel mixed-effects logistic regression models. RESULTS: Among 867,695 hospice enrollees with dementia, 70,945 (8.2%) were disenrolled due to extended prognosis and 43,133 (5.0%) revoked within 1-year of their index admission. There was substantial variation in hospice provider disenrollment due to extended prognosis (10th-90th percentile 4.5%-14.6%, adjusted median odds ratio (MOR) 1.86, 95% confidence interval (CI) 1.82, 1.91) and revocation (10th-90th percentile 2.5%-10.1%, MOR 2.09, 95% CI 2.03, 2.14). Among hospital referral regions (HRR), there was more variation in revocation (10th-90th percentile 3.5%-7.6%, MOR 1.4, 95% CI 1.34, 1.47) than extended prognosis (10th-90th percentile 7.0%-9.5%, MOR 1.23, 95% CI 1.18, 1.27), with much higher revocation rates noted in HRRs located in the Southeast and Southern California. A number of patient and hospice characteristics were associated with higher odds of both types of disenrollment (younger age, female sex, minoritized race and ethnicity, Medicaid dual eligibility, Medicare Part C enrollment), while some were associated with revocation only (more comorbidities, newer, smaller, and for-profit hospices). CONCLUSIONS: In this nationally representative study of hospice enrollees with dementia, hospice disenrollment varied by type of hospice, geographic region, and patient characteristics including age, sex, race, and ethnicity. These findings raise important questions about whether and how the Medicare Hospice Benefit could be adapted to reduce disparities and better support PWD.

Hospice Improves Care Quality For Older Adults With Dementia In Their Last Month Of Life.

The Medicare hospice benefit was originally designed around a cancer disease paradigm but increasingly serves people living with dementia. At this time, almost half of all older adults receiving hospice care have dementia. Yet there is minimal evidence as to whether hospice benefits people living with dementia outside of nursing facilities. We asked whether and how the perceived quality of last-month-of-life care differed between people with and without dementia and whether hospice use among people living with dementia was associated with perceived quality of care compared with the quality of care for those who did not use hospice. We used nationally representative data from the National Health and Aging Trends Study and Medicare claims from the period 2011-17 to examine the impact of hospice enrollment on proxy perceptions of last-month-of-life care quality. Proxies of people living with dementia enrolled in hospice compared with proxies of those not enrolled more often reported care to be excellent (predicted probability: 52 percent versus 41 percent), more often reported having anxiety or sadness managed (67 percent versus 46 percent), and less often reported changes in care settings in the last three days of life (10 percent versus 25 percent). There were no differences in the impact of hospice on proxy ratings of care for people with and without dementia. Policy makers should consider these benefits when weighing changes to hospice policy and regulations that may affect people living with dementia.

Impact of Comorbid Dementia on Patterns of Hospice Use.

Background: The evidence base for understanding hospice use among persons with dementia is almost exclusively based on individuals with a primary terminal diagnosis of dementia. Little is known about whether comorbid dementia influences hospice use patterns. Objective: To estimate the prevalence of comorbid dementia among hospice enrollees and its association with hospice use patterns. Design: Pooled cross-sectional analysis of the nationally representative Health and Retirement Study (HRS) linked to Medicare claims. Subjects: Fee-for-service Medicare beneficiaries in the United States who enrolled with hospice and died between 2004 and 2016. Measurements: Dementia was assessed using a validated survey-based algorithm. Hospice use patterns were enrollment less than or equal to three days, enrollment greater than six months, hospice disenrollment, and hospice disenrollment after six months. Results: Of 3123 decedents, 465 (14.9%) had a primary hospice diagnosis of dementia and 943 (30.2%) had comorbid dementia and died of another illness. In fully adjusted models, comorbid dementia was associated with increased odds of hospice enrollment greater than six months (adjusted odds ratio [AOR] = 1.52, 95% confidence interval [CI]: 1.11-2.09) and hospice disenrollment following six months of hospice (AOR = 2.55, 95% CI: 1.43-4.553). Having a primary diagnosis of dementia was associated with increased odds of hospice enrollment greater than six months (AOR = 2.62, 95% CI: 1.86-3.68), hospice disenrollment (AOR = 1.82, 95% CI: 1.32-2.51), and hospice disenrollment following six months of hospice (AOR = 4.31, 95% CI: 2.37-7.82). Conclusion: Approximately 45% of the hospice population has primary or comorbid dementia and are at increased risk for long hospice enrollment periods and hospice disenrollment. Consideration of the high prevalence of comorbid dementia should be inherent in hospice staff training, quality metrics, and Medicare Hospice Benefit policies.

Transitions from Home Health to Hospice: The Role of Agency Affiliation.

Background: Home health agencies (HHAs) are often affiliated with hospice agencies and commonly care for patients with serious illness within the Medicare program. HHAs may therefore provide a potential opportunity to facilitate timely referral to hospice when appropriate. Objectives: To determine if patients cared for by HHAs affiliated with hospice agencies experience differential hospice use and care patterns. Design: Nationally representative cohort study. Setting/Subjects: 1431 decedents in the 2002 to 2017 Medicare Current Beneficiary Survey who received home health in the last year of life in the United States. Measurements: Primary independent variable was HHA hospice affiliation. Primary dependent variable was hospice enrollment; secondary dependent variables were hospice live discharge and length of stay. Results: The 27.3% of decedents cared for by a HHA affiliated with a hospice had greater education levels and wealth and were more likely to live in the Midwest and Northeast. In adjusted models, HHA-hospice affiliated decedents had greater odds of enrolling in hospice compared to those cared for by HHAs not affiliated with a hospice, corresponding to a hospice enrollment rate of 51.0% for those cared for by HHAs affiliated with hospices versus 39.7% for HHAs not affiliated (p = 0.004). There were no differences in hospice length of stay or live discharge rate by hospice affiliation. Conclusion: Medicare beneficiaries cared for by HHAs affiliated with hospices are more likely to enroll in hospice at the end of life. This has implications for improving hospice access through home health incentives and models of care.

Retrospective analysis of characteristics associated with higher-value radiotherapy episodes of care for bone metastases in Medicare fee-for-service beneficiaries.

OBJECTIVES: The Centers for Medicare & Medicaid Services' newly enacted Radiation Oncology Model ('RO Model') was designed to test the cost-saving potential of prospective episode-based payments for radiation treatment for 17 cancer diagnoses by encouraging high-value care and more efficient care delivery. For bone metastases, evidence supports the use of higher-value, shorter courses of radiation (≤10 fractions). Our goal was to determine the prevalence of short radiation courses (≤10 fractions) for bone metastases and the setting, treatment and patient characteristics associated with such courses and their expenditures. DESIGN: Using the RO Model episode file, we evaluated receipt of ≤10 fractions of radiotherapy for bone metastases and expenditures by treatment setting for Medicare fee-for-service beneficiaries during calendar years 2015-2017.Using unadjusted and adjusted regression models, we determined predictors of receipt of ≤10 fractions and expenditures. Multivariable models adjusted for treatment and patient characteristics. RESULTS: There were 48 810 episodes for bone metastases during the period. A majority of episodes for ≤10 fractions occurred in hospital-outpatient settings (62.8% (N=22 715)). After adjusting for treatment and patient factors, hospital-outpatient treatment setting remained a significant predictor of receiving ≤10 fractions (adjusted OR 2.03 (95% CI 1.95, 2.12; p<0.001) vs free-standing). The greatest adjusted contributors to total expenditures were number of fractions (US$-3424 (95% CI US$-3412 to US$-3435) for ≤10 fractions vs >10; p<0.001) and treatment type (including US$7716 (95% CI US$7424 to US$8018) for intensity modulated radiation therapy vs conventional external beam; p<0.001). CONCLUSIONS: A measurable performance gap exists for delivery of higher-value bone metastases radiotherapy under an episode-based model, associated with increased expenditures. The RO Model may succeed in improving the value of bone metastases radiation. Increasing the capacity of free-standing centres to implement palliative-focused services may improve the ability of these practices to succeed under the RO Model.

Service Availability in Assisted Living and Other Community-Based Residential Settings at the End of Life.

Background: Community-based residential settings (e.g., assisted living facilities and retirement communities), are increasing, where vulnerable older adults are living as they age and die. Despite prevalent serious illness, functional impairment, and dementia among residents, the mix and types of built-in services available are not known. Objective: To classify older adults in community-based residential settings by the types of services available and examine associations between service availability and hospice use and location of death. Design: Pooled cross-sectional analysis. Setting: Medicare Current Beneficiary Survey data (2002-2018). Subjects: U.S. adults 65 years of age and older, who lived in a community-based residential setting and died between 2002 and 2018 (N = 1006). Measurements: Availability (yes/no) of nursing care, medication assistance, meals, laundry, cleaning, transportation, and recreation. Results: Our sample resided in assisted living facilities (32.0%), retirement communities (29.0%), senior citizen housing (13.7%), continuing care facilities (13.5%), and other (11.8%). Four classes of individuals with distinct combinations of available services were identified: 48.2% lived in a residence with all measured services available; 29.1% had availability of all services, except nursing care and medication assistance; 12.6% had availability of only recreation and transportation services; and 10.1% had minimal/no service availability. Of the 51.8% of older adults residing in settings without clinical services, more than half died at home and fewer than half died with hospice. Conclusions: The majority of older adults who die in community-based residential settings do not have access to built-in clinical services. Palliative care training for staff in these settings may be warranted, given variable rates of hospice use and high rates of home death.