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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.

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.

Background and Objectives The coronavirus disease 2019 (COVID-19) pandemic severely disrupted hospice care, yet there is little research regarding how widespread disruptions affected clinician and family decision-making. We aimed to understand how the pandemic affected structures, processes, and outcomes of end-of-life care. Research Design and Methods Retrospective narrative chart review of electronic health records of 61 patients referred and admitted to hospice from 3 New York City geriatrics practices who died between March 1, 2020, and March 31, 2021. We linked longitudinal, unstructured medical, and hospice electronic health record notes to create a real-time, multiperspective trajectory of patients' interactions with providers using directed content analysis. Results Most patients had dementia and were enrolled in hospice for 11 days. Care processes were shaped by structural factors (staffing, supplies, and governmental/institutional policies), and outcomes were prioritized by care teams and families (protecting safety, maintaining high-touch care, honoring patient values, and supporting patients emotionally and spiritually). Processes used to achieve these outcomes were decision-making, care delivery, supporting a "good death," and emotional and spiritual support. Discussion and Implications Care processes were negotiated throughout the end of life, with clinicians and families making in-the-moment decisions. Some adaptations were effective but also placed extraordinary pressure on paid and family caregivers. Healthcare teams' and families' goals to meet patients' end-of-life priorities can be supported by ongoing assessment of patient goals and process changes needed to support them, stronger structural supports for paid and family caregivers, incentivizing relationships across primary care and hospice teams, and extending social work and spiritual care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]