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Home care workers played critical roles in meeting the complex medical and social needs of homebound adults during COVID-19, yet their contributions remain underappreciated. This study characterizes home care workers' roles during COVID-19 and examines how home care disruptions impacted homebound individuals and caregivers. Using a qualitative analysis of electronic medical records among a randomly sampled subset of homebound patients in a home-based primary care practice, we found that home care workers were essential in meeting existing and new needs of homebound individuals. Insufficient home care worker services, including unstable schedules and inadequate hours of paid care, became particularly disruptive, leading to risks for patients and their caregivers. Given their integral role on care teams, home care workers must be a policy focus to prepare for emergent situations and ensure that homebound individuals have access to high quality, stable home care. [ABSTRACT FROM AUTHOR]

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers (n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the "right" paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home. [ABSTRACT FROM AUTHOR]

Background: Medicare home health could be leveraged to care for those near the end of life (EOL), especially for those who cannot access nor desire the Medicare hospice benefit. It is unknown what role home health currently has either preceding or as an alternative to hospice use. Objective: The aim of this study is to compare populations served and visit patterns of Medicare beneficiaries receiving home health/hospice/both near the EOL. Design: Nationally representative cohort study of National Health and Aging Trends Study (NHATS) respondents. Setting/Subjects: A total of 1,057 U.S. decedents in NHATS from 2012 to 2017 with linked Medicare claims were included in this study. Measurements: Measurements included the proportion of decedents who received home health/hospice/both/neither (yes/no) in the last six months of life (EOL) and mean number of visits by discipline (nurse/therapist [physical/occupational speech–language pathologist]/social worker/home health aide) per 30 eligible days at home for home health/hospice/both at the EOL. The primary independent variable was the clinician discipline providing services (nurse/therapist/social worker/aide). Results: In our sample, 19.9% received home health only, 25.8% hospice only, 18.8% both, and 35.6% neither at the EOL. These populations varied in their demographic, region, and clinical characteristics. Decedents who received home health only compared with hospice only were younger (44.1% over age 85 vs. 58.4%), members of a racially/ethnically diverse group (19.7% vs. 10.9%), and with less disability (37.2% required no assistance with activities of daily living vs. 22.7%), all p values <0.05. In adjusted models, those receiving home health versus hospice received similar numbers of visits per 30 days (average 5.4/30 vs. 6.6/30), while those receiving both received more visits (10.5/30). Home health provided more therapy visits, while hospice provided more social work and aide visits. Conclusions: More than one in three Medicare decedents nationwide received home health at the EOL. Home health has the potential to serve a population not reached by hospice and improve the quality of end-of-life care. [ABSTRACT FROM AUTHOR]

This study evaluates help sources for personal and health tasks of adults living in the community without a spouse or nearby children. Using data from the National Health and Aging Trends Study (NHATS), a nationally representative sample of Medicare beneficiaries ages 65 and over, we conducted a population-based study of 2998 community-dwelling adults who received assistance with personal, household, or medical tasks in the past month. Using ANOVA, we compared adults aging solo to those with spouses at home and/or children in the same state. Adults aging solo were significantly more likely to identify non-child/spouse family, friends, neighbors and paid aides as part of their social networks. Their sources of unpaid help included siblings (33%), friends (32%), and non-family (e.g., neighbors (23%)). Adults aging solo were more likely to use paid caregivers, despite having lower incomes than married peers. Interventions to support adults aging solo should incorporate diverse social/help networks. [ABSTRACT FROM AUTHOR]

Background: Family caregivers play an increasing role in cancer treatment decision‐making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. Methods: Analysis of 2021 national survey data of family caregivers of patients with cancer (N = 2703). Bias experienced in decision support was assessed with the item: "Have you felt that the support you and the person with cancer have received for making cancer‐related decisions by your doctor or healthcare team has been negatively affected by any of the following?" Check‐all‐that‐apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi‐square and regression analyses assessed associations between bias and caregiver distress (GAD‐2, PHQ‐2). Results: Of 2703 caregiver respondents, 47.4% (n = 1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer‐related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non‐conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD‐2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6–2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4–5.3) compared to none. Similar results were found for high depression scores (PHQ‐2 scores ≥ 3). Conclusions: Nearly half of caregivers involved in their care recipients' cancer‐related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress. [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]

Background: The Centers for Medicare & Medicaid Services (CMS) announced the Acute Hospital Care at Home (AHCaH) waiver program in November 2020 to help expand hospital capacity to cope with the COVID‐19 pandemic. The AHCaH waived the 24/7 on‐site nursing requirement and enabled hospitals to obtain full hospital‐level diagnosis‐related group (DRG) reimbursement for providing Hospital‐at‐Home (HaH) care. This study sought to describe AHCaH implementation processes and strategies at the national level and identify challenges and facilitators to launching or adapting a HaH to meet waiver requirements. Methods: We conducted semi‐structured interviews to explore barriers and facilitators of HaH implementation. The analysis was informed by the Exploration, Preparation, Implementation, and Sustainment (EPIS) implementation framework. Interviews were audio recorded for transcription and thematic coding. Principal Findings: We interviewed a sample of clinical leaders (N = 18; clinical/medical directors, operational and program managers) from 14 new and pre‐existing U.S. HaH programs diverse by size, urbanicity, and geography. Participants were enthusiastic about the AHCaH waiver. Participants described barriers and facilitators at planning and implementation stages within three overarching themes influencing waiver program implementation: 1) institutional value and assets; 2) program components, such as electronic health records, vendors, pharmacy, and patient monitoring; and 3) patient enrollment, including eligibility and geographic limits. Conclusions: Implementation of AHCaH waiver is a complex process that requires building components in compliance with the requirements to extend the hospital into the home, in coordination with internal and external partners. The study identified barriers that potential adopters and proponents should consider alongside the strategies that some organizations have found useful. Clarity regarding the waiver's future may expedite HaH model dissemination and ensure longevity of this valuable model of care delivery. See related Editorial by Brody et al. in this issue. [ABSTRACT FROM AUTHOR]