Abraham A. Brody

Abstract

Context: The critical role of hospice and palliative care in response to the COVID-19 pandemic is well recognized, but there is limited evidence to guide healthcare leadership through future crises. Objectives: Our goal was to support future organizational resilience by exploring hospice and palliative team members’ perspectives on crisis leadership during the COVID-19 pandemic in New York City (NYC). Methods: This qualitative descriptive study used individual, semi-structured interviews of purposively sampled interdisciplinary team members. Enrollment sites were two large NYC metro hospice care organizations and one outpatient palliative care practice. We asked participants to complete a demographic form and a 45–60 minute interview. We used descriptive statistics and thematic analysis, respectively, for data analysis. We triangulated the data by presenting preliminary study findings to a group of clinicians (n=21) from one of the referring organizations. Results: Participants (n=30) were professionally diverse (e.g., nurses, physicians, social workers, chaplains, administrators), experienced (mean=17 years; 10 years in hospice), and highly educated (83% ≥ master's degree). About half (n=15) self-identified as white, non-Hispanic, and nearly half (n=13) self-identified as being from a racial/ethnic minoritized group. Two (n=2) did not wish to self-identify. We identified four themes that reflected challenges and adaptive responses to providing care during a crisis: Stay Open and Stay Safe; Act Flexibly; Lead Adaptively; and Create a Culture of Solidarity. Conclusion: While additional work is indicated, findings offer direction for a crisis management playbook to guide leadership in hospice, palliative care, and other healthcare settings in future crises.

Abstract

Background: Medicare-funded home healthcare (HHC) delivers skilled nursing, therapy, and related services through visits to the patient’s home. Nearly one-third (31%) of HHC patients have diagnosed dementia, but little is currently known regarding how HHC utilization and care delivery differ for persons living with dementia (PLwD). Methods: We drew on linked 2012–2018 Health and Retirement Study and Medicare claims for a national cohort of 1 940 community-living older adults. We described differences in HHC admission, length of stay, and referral source by patient dementia status and used weighted, multivariable logistic and negative binomial models to estimate the relationship between dementia and HHC visit type and intensity while adjusting for sociodemographic characteristics, health and functional status, and geographic/community factors. Results: PLwD had twice the odds of using HHC during a 2-year observation period, compared to those without dementia (odds ratio [OR]: 2.03; p < .001). They were more likely to be referred to HHC without a preceding hospitalization (49.4% vs 32.1%; p < .001) and incurred a greater number of HHC episodes (1.4 vs 1.0; p < .001) and a longer median HHC length of stay (55.8 days vs 40.0 days; p < .001). Among post-acute HHC patients, PLwD had twice the odds of receiving social work services (unadjusted odds ratio [aOR]: 2.15; p = .008) and 3 times the odds of receiving speech-language pathology services (aOR: 2.92; p = .002). Conclusions: Findings highlight HHC’s importance as a care setting for community-living PLwD and indicate the need to identify care delivery patterns associated with positive outcomes for PLwD and design tailored HHC clinical pathways for this patient subpopulation.

Abstract

Purpose: Utilizing a participatory approach, we sought to co-design a 12-week Green Activity Program (GAP) with Hispanic/Latino individuals living with memory challenges and their care partners, local outdoor professionals, and healthcare providers. Methods: Participants were recruited via convenience and snowball sampling in the Bronx, New York with Hispanic/Latino persons living with memory challenges and care partners, outdoor activity professionals, and interdisciplinary healthcare providers/dementia experts. Co-design occurred iteratively with 5 focus groups and 4 individual interviews lasting 30–90 min and focused on program and research design. Sessions were recorded and transcribed. Utilizing directed content analysis data was coded using a priori codes program design and research design. Results: 21 participants completed co-design activities: (n = 8 outdoor activity professionals, n = 6 Hispanic/Latino persons living with memory challenges and care partners, and n = 7 interdisciplinary healthcare providers/dementia experts). Participant preferences for program design were captured by subcodes session duration (30–90 min), frequency (4–8 sessions), and delivery modes (in-person and phone). Participants' preferred nature activities included group exercise and outdoor crafts [crocheting], outcomes of social participation, connectedness to nature, decreased loneliness, and stewardship were identified. Preferred language for recruiting and describing the program were “memory challenges,” “Hispanic/Latino,” and “wellbeing.” Referral pathways were identified including community-based organizations and primary care. Conclusion: Co-design was a successful form of engagement for people living with memory challenges that enabled participants to help design key elements of the GAP and research design. Our processes, findings, and recommendations for tailoring co-design to engage Hispanic/Latino people living with memory challenges can inform the development of other programs for this population.

Abstract

Understanding the complex care needs of seriously ill adults with multiple chronic conditions with and without cancer is critical for the delivery of high-quality serious illness and palliative care at the end of life. The objective of this secondary data analysis of a multisite randomized clinical trial in palliative care was to elucidate the clinical profile and complex care needs of seriously ill adults with multiple chronic conditions and to highlight key differences among those with and without cancer at the end of life. Of the 213 (74.2%) older adults who met criteria for multiple chronic conditions (eg, 2 or more chronic conditions requiring regular care with limitations of daily living), 49% had a diagnosis of cancer. Hospice enrollment was operationalized as an indicator for severity of illness and allowed for the capture of complex care needs of those deemed to be nearing the end of life. Individuals with cancer had complex symptomatology with a higher prevalence of nausea, drowsiness, and poor appetite and end of life and lower hospice enrollment. Individuals with multiple chronic conditions without cancer had lower functional status, greater number of medications, and higher hospice enrollment. The care of seriously ill older adults with multiple chronic conditions requires tailored approaches to improve outcomes and quality of care across health care settings, particularly at the end of life.

Abstract

Background: As more Americans age in place, it is critical to understand care delivery in the home. However, data on the range of home-based services provided by Medicare is limited. We define a taxonomy of clinical care in the home funded through fee-for-service Medicare and methods to identify receipt of those services. Methods: We analyzed Fee-for-service (FFS) Medicare claims data from a nationally-representative cohort of older adults, the National Health and Aging Trends Study (NHATS), to identify home-based clinical care. We included 6,664 NHATS enrollees age ≥ 70 and living in the community, observed an average of 3 times each on claims-linked NHATS surveys. We examined provider and service type of home-based clinical care to identify a taxonomy of 5 types: home-based medical care (physician, physician assistant, or nurse practitioner visits), home-based podiatry, skilled home health care (SHHC), hospice, and other fee-for-service (FFS) home-based care. We further characterized home-based clinical care by detailed care setting and visit types. Results: From 2011–2016, 17.8%-20.8% of FFS Medicare beneficiaries age ≥ 70 received Medicare-funded home-based clinical care. SHHC was the most common service (12.8%-16.1%), followed by other FFS home-based care (5.5%-6.5%), home-based medical care (3.2%-3.9%), and hospice (2.6%-3.0%). Examination of the other-FFS home-based care revealed imaging/diagnostics and laboratory testing to be the most common service. Conclusions: We define a taxonomy of clinical care provided in the home, serving 1 in 5 FFS Medicare beneficiaries. This approach can be used to identify and address research and clinical care gaps in home-based clinical care delivery.

Abstract

Persons living with advanced cancer have intensive symptoms and psychosocial needs that often result in visits to the Emergency Department (ED). We report on program engagement, advance care planning (ACP), and hospice use for a 6-month longitudinal nurse-led, telephonic palliative care intervention for patients with advanced cancer as part of a larger randomized trial. Patients 50 years and older with metastatic solid tumors were recruited from 18 EDs and randomized to receive nursing calls focused on ACP, symptom management, and care coordination or specialty outpatient palliative care (ClinicialTrials.gov: NCT03325985). One hundred and five (50%) graduated from the 6-month program, 54 (26%) died or enrolled in hospice, 40 (19%) were lost to follow-up, and 19 (9%) withdrew prior to program completion. In a Cox proportional hazard regression, withdrawn subjects were more likely to be white and have a low symptom burden compared to those who did not withdraw. Two hundred eighteen persons living with advanced cancer were enrolled in the nursing arm, and 182 of those (83%) completed some ACP. Of the subjects who died, 43/54 (80%) enrolled in hospice. Our program demonstrated high rates of engagement, ACP, and hospice enrollment. Enrolling subjects with a high symptom burden may result in even greater program engagement.

Abstract

Introduction: Poor sleep is ubiquitous in skilled nursing facilities (SNFs) and is associated with a myriad of negative symptoms. Non-pharmacological interventions can improve sleep, yet sustainability has not been demonstrated. The Improving Sleep Using Mentored Behavioral and Environmental Restructuring (SLUMBER) trial will test whether a staff mentoring approach to address resident sleep issues positively impacts sleep quality and whether improved sleep benefits mood, cognitive performance, and activity engagement for residents living in SNFs. Intervention: This is a four-year hybrid type I effectiveness/implementation randomized stepped-wedge trial using a comprehensive sleep improvement program conducted in three urban SNFs. Methods: We will provide SNF staff with sleep promotion strategies over a four-month intervention. Staff will have access to in-person workshops, webinars, weekly sleep pearls via text messaging, environmental data, and expert program mentors. We will consent residents for data collection (at baseline, end of intervention, and three- and six-months post-intervention) including resident observations, questionnaires, and wrist actigraphy (to objectively measure sleep). We will also use selected Minimum Data Set 3.0 (MDS) measures. Conclusion: SLUMBER uses a unique strategy to iteratively improve sleep interventions through SNF staff buy-in, expert mentoring, and technological supports within a quality improvement framework. As a stepped-wedge trial, the initial SNF units provide opportunities for program improvement in subsequent units, accounting for variation across resident populations at different sites. Protocol limitations include strategies which may require substantial customization for greater spread. A comprehensive staff training program that addresses both sleep quality and related symptoms has the opportunity for considerable dissemination.

Abstract

The objective of this study was to characterize multiple chronic conditions (MCCs) among seriously ill adults receiving palliative care at the end of life. A latent class analysis was conducted to identify latent subgroups of seriously ill older adults based on a baseline Charlson comorbidity index (CCI) measurement, a measure of comorbidity burden, and mortality risk. The three latent subgroups were: (1) low to moderate CCI with MCC, (2) high CCI with MCC, and (3) high CCI and metastatic cancer. The “low to moderate CCI and MCC” subgroup included older adults with chronic obstructive pulmonary disease (COPD), cardiovascular disease, congestive heart failure, myocardial infarction, dementia, diabetes, and lymphoma. A “high CCI and MCC” subgroup included individuals with severe illness including liver or renal disease among other MCCs. A “high CCI and metastatic cancer” included all participants with metastatic cancer. This study sheds light on the MCC profile of seriously ill adults receiving palliative care.

Abstract

Background: We sought to describe neuropsychiatric symptoms (NPS) among people living with dementia (PLWD) from diverse racial and ethnic groups receiving home health services while accounting for dementia severity, individual symptom prevalence, and neighborhood disadvantage. Methods: A prospective study using cross-sectional data from n = 192 PLWD receiving skilled home healthcare in New Jersey enrolled in the Dementia Symptom Management at Home Program trial. We prospectively measured symptom prevalence with the Neuropsychiatric Inventory Questionnaire and dementia severity using the Quick Dementia Rating System. A one-way ANOVA determined NPS prevalence by dementia severity (mild, moderate, severe). Fisher's exact tests were used to assess the association of individual symptom prevalence with race and ethnicity and cross tabs to descriptively stratify individual symptom prevalence by dementia severity among groups. A Pearson correlation was performed to determine if a correlation existed among neighborhood disadvantages measured by the Area Deprivation Index (ADI) state decile scores and NPS prevalence and severity. Results: Participants identified as non-Hispanic White (50%), non-Hispanic Black (30%), or Hispanic (13%). NPS were prevalent in 97% of participants who experienced 5.4 ± 2.6 symptoms with increased severity (10.8 ± 6.6) and care partner distress (13.8 ± 10.8). NPS increased with dementia severity (p = 0.004) with the greatest difference seen between individuals with mild dementia (4.3 ± 2.3) versus severe dementia (5.9 ± 2.3; p = 0.002). Few differences were found in symptom prevalence by racial and ethnic sub-groups. Nighttime behaviors were higher in non-Hispanic Black (78%), compared with non-Hispanic Whites (46%) with moderate dementia, p = 0.042. State ADI scores were not correlated with the number of NPS reported, or severity. Conclusions: NPS were prevalent and increased with dementia severity with commonalities among racial and ethnic groups with varying levels of neighborhood disadvantage. There is a need for effective methods for improving NPS identification, assessment, and management broadly for homebound PLWD.