Search

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. [ABSTRACT FROM AUTHOR]

Background: Given the complex care needs of older adults receiving home health care (HHC), it is important for HHC clinicians to identify those with limited prognosis who may benefit from a transition to hospice care. Objectives: To assess the association between HHC clinician-identified likelihood of death and (1) 1-year mortality, and (2) hospice use. Methods: Prospective cohort study from the National Health and Aging Trends Study (NHATS) waves 2011–2018, linked to the Outcomes and Assessment Information Set (OASIS) HHC assessment and Medicare data among 915 community-dwelling NHATS respondents. HHC clinician—identified likelihood of death/decline was determined using OASIS item M1034. Multivariable logistic regression was used to assess the association between clinician-identified likelihood of death/decline and 1-year mortality and hospice use. Results: HHC clinicians identified 42% of the sample as at increased risk of decline or death. One year mortality was 22.3% (n = 548), and 15.88% (n = 303) used hospice within 12 months of HHC. HHC clinician-perceived likelihood of death/decline was associated with greater odds of 1-year mortality (odds ratio [OR], 6.57; confidence interval (95% CI), 2.56–16.90) and was associated with greater likelihood of hospice use (OR, 1.61; 95% CI, 1.00–2.62). Conclusion: HHC clinician perception of patients' risk of death or decline is associated with 1-year mortality. A better understanding of HHC patients at high risk for mortality can facilitate improved care planning and identification of homebound older adults who may benefit from hospice. [ABSTRACT FROM AUTHOR]

Background: The population of older adults who are unpartnered and childless (i.e., "kinless") is increasing across the globe, and may be at risk for lower quality end-of-life (EoL) experiences due to lack of family support, assistance, and advocacy. Yet, little research exists on the EoL experiences of "kinless" older adults. Objectives: To document associations between family structure (i.e., presence or absence of partner or child) and intensity of EoL experiences (i.e., visits to medicalized settings before death). Design: The study design is a cross-sectional population-based register study of the population of Denmark. Subjects: Participants include all adults age 60 years and older who died of natural causes in Denmark from 2009 to 2016 (n = 137,599 decedents). Results: "Kinless" older adults (reference = has partner, has child) were the least likely group to visit the hospital (two or more times; odds ratio [OR] = 0.74, confidence interval [CI] = 0.70–0.77), emergency department (one or more times; OR = 0.90, CI = 0.86–0.93), and intensive care unit (one or more times; OR = 0.71, CI = 0.67–0.75) before death. Conclusions: "Kinless" older adults in Denmark were less likely to experience medically intensive care at the EoL. Further research is needed to understand factors associated with this pattern to ensure that all individuals receive high quality EoL care regardless of their family structure and family tie availability. [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]

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. [ABSTRACT FROM AUTHOR]

Background: Scant research has examined the relationship between family characteristics and end-of-life (EOL) outcomes despite the importance of family at the EOL. Objectives: This study examined factors associated with the size and composition of family relationships on multiple EOL hospitalizations. Design: Retrospective analysis of the Utah Population Database, a statewide population database using linked administrative records. Setting/subjects: We identified adults who died of natural causes in Utah, United States (n = 216,913) between 1998 and 2016 and identified adult first-degree family members (n = 743,874; spouses = 13.2%; parents = 3.6%; children = 51.7%; siblings = 31.5%). Measurements: We compared demographic, socioeconomic, and death characteristics of decedents with and without first-degree family. Using logistic regression models adjusting for sex, age, race/ethnicity, marital status, comorbidity, and causes of death, we examined the association of first-degree family size and composition, on multiple hospitalizations in the last six months of life. Results: Among decedents without documented first-degree family members in Utah (16.0%), 57.7% were female and 7 in 10 were older than 70 years. Nonmarried (aOR = 0.90, 95% CI = 0.88–0.92) decedents and decedents with children (aOR = 0.97, 95% CI = 0.94–0.99) were less likely to have multiple EOL hospitalizations. Family size was not associated with multiple EOL hospitalizations. Conclusions: First-degree family characteristics vary at the EOL. EOL care utilization may be influenced by family characteristics—in particular, presence of a spouse. Future studies should explore how the quality of family networks, as well as extended family, impacts other EOL characteristics such as hospice and palliative care use to better understand the EOL care experience. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Pain is common among adults with traumatic brain injury (TBI), yet little data exist regarding prevalence of opioid use in this population. The objective of this retrospective cohort study was to evaluate the association between lifetime TBI exposure, opioid use, and pain in a nationally representative sample of 1022 adults aged 50+ who participated in the Health and Retirement Study (HRS). Our primary exposure was lifetime TBI history measured via the Ohio State University TBI Identification Method. We evaluated three alternate TBI exposures (years since most recent TBI, age at first TBI, and number of lifetime TBIs) in sensitivity analyses. We evaluated two outcomes: recent opioid medication use, and moderate-to-severe pain measured over two HRS waves. We classified three pain groups (persistent, intermittent, and no pain). Prevalences of opioid use among individuals with and without TBI were 19.7% and 13.6%, respectively. After adjustment for age, sex, and race, individuals with TBI had a 52% increased risk for opioid use compared with individuals without TBI (relative risk = 1.52, 95% confidence interval: 1.11, 2.04). Individuals with recent TBI (1–10 years ago), first TBI after age 40+, and 2+ lifetime TBIs had greatest risk for opioid use. Compared with individuals without TBI, individuals with TBI had 4.9-times increased odds for persistent versus no pain, and 1.9-times increased odds of intermittent versus no pain. Persistent pain among adults with lifetime TBI is elevated compared with the general population, which may contribute to increased opioid use among persons with TBI, particularly those with recent injuries or multiple lifetime TBIs. [ABSTRACT FROM AUTHOR]

Background: Little is known about the experience of treatment burden, or the difficulties that arise when the treatment workload overwhelms one's ability to take on treatment activities, at the end of life. Objective: We first assessed rates of treatment burden experienced by all older adults in the last three years of life. Among the subset of our sample who had multiple chronic conditions (MCCs), we determined correlates of treatment burden with sociodemographic, health, and caregiving factors. Design: We conducted a cross-sectional study using nationally representative data from the National Health and Aging Trends Study (NHATS). Setting/Subjects: Our sample included 356 adults, aged 65 years and older, who died within three years of completing the 2012 NHATS Treatment Burden Questionnaire. Our MCC cohort included only those in our sample with two or more chronic conditions. Measurements: Our measure of treatment burden included reports of difficulty in managing treatment activities, delays in treatments, or feeling that physicians asked for too much. We built a composite measure to identify burden if participants reported that at least one item occurred sometimes or often. Results: Forty-three percent of older adults in their last three years of life experienced treatment burden. Among individuals with MCCs, bivariate analysis found that treatment burden was associated with being a racial minority and having depression, anxiety, and a cancer diagnosis. These associations were not statistically significant in a multivariable model. Conclusion: Treatment burden is a common experience among older adults regardless of sociodemographic, clinical, and caregiving factors. [ABSTRACT FROM AUTHOR]

Background: Demographic and contextual factors are associated with quality of life (QoL) in older adults and prediagnosis QoL among older adults has important implications for supportive care in older cancer patients. Objective: To examine whether lower educational attainment is associated with poorer QoL among community dwelling older adults just before their diagnosis of lung cancer in a nationally representative sample. Design: This study used the Surveillance, Epidemiology, and End Results (SEER)-Medicare Health Outcomes Survey (MHOS) dataset, which provides cancer registry data linked with survey data for Medicare Advantage enrollees. Subjects: Adults 65 years and older at time of diagnosis with first or only primary lung cancer and with at least one survey before their cancer diagnosis. Measurements: Level of education attained was categorized as less than high school (

Background: Palliative care is associated with improved patient and family outcomes and lower cost of care, but studies estimate that <50% of hospitalized adults in the United States who are appropriate for palliative care receive it. Few studies have addressed demographic and clinical factors associated with receipt of palliative care. Objective: Our aim was to identify characteristics of hospitalized advanced cancer patients that are associated with referral to an interdisciplinary hospital-based palliative care team. Methods: The data are from a prospective observational study of hospitalized advanced cancer patients in five hospitals. We used multivariable logistic regression to estimate the relationship between patient characteristics and palliative care referral. Results: The sample includes 3096 patients; 81% received usual care and 19% were referred to palliative care. Advanced cancer patients were twice as likely to receive palliative care referral if, at admission, they needed assistance with transfer from bed ( p = 0.002) and about 1.5 times as likely if they were taking medication for pain ( p = 0.002), nausea ( p = 0.04), or constipation ( p = 0.04). Patients with more comorbidities ( p = 0.001) and higher symptom burden ( p = 0.001) were more likely to be referred. Conclusion: Advanced cancer patients were more likely to be referred to the palliative care consultation team if they had high symptom burden at hospital admission. Overall a minority of advanced cancer patients were referred. Standardized screening for palliative care may be needed to ensure that advanced cancer patients receive the highest quality of evidence based care. [ABSTRACT FROM AUTHOR]

Background: Although family satisfaction is recognized as a critical indicator of quality for patients with advanced cancer, it is rarely assessed as part of routine clinical care. Measurement burden may be one barrier to widespread use of family satisfaction measures. Objective: The goal of this study was to test the ability of a new, brief 5-item measure of family satisfaction with care to accurately capture differences across hospital settings. Design: Using data from the Palliative Care for Cancer Patients study, a prospective study of 1979 patients and caregivers, we used multivariate regression analysis to detect significant differences across five sites. Settings: Hospitalized patients with advanced cancer and their caregivers Methods: We used both the shortened 5-item version of the FAMCARE scale (previously developed using Item Response Theory) and the original 20-item FAMCARE to measure family satisfaction. Results: On the 5-item FAMCARE, sites ranged from mean scores of 5.5-6.9 out of a possible high score of 10. Family members at one care site ( n = 783) were significantly ( p < 0.05) less satisfied with their care than family members at four other care sites. The original 20-item measure failed to differentiate satisfaction levels between all hospital sites. Discussion: Variability in family satisfaction with advanced cancer care across hospital settings can be more sensitively detected using a brief 5-item questionnaire versus longer measures. The development of less lengthy and burdensome measures for monitoring family satisfaction, which are still valid, can facilitate routine assessments to maintain and promote high-quality care across care settings. [ABSTRACT FROM AUTHOR]

Background: Hospice use has been shown to benefit quality of life for patients with terminal illness and their families, with further evidence of cost savings for Medicare and other payers. While disparities in hospice use by patient diagnosis, race, and region are well documented and attention to the role of family members in end-of-life decision-making is increasing, the influence of spousal characteristics on the decision to use hospice is unknown. Objectives: To determine the association between spousal characteristics and hospice use. Design: We used data from the Health and Retirement Study (HRS), a prospective cohort study, linked to the Dartmouth Atlas of Health Care and Medicare claims. Setting: National study of 1567 decedents who were married or partnered at the time of death (2000-2011). Measures: Hospice use at least 1 day in the last year of life as measured via Medicare claims data. Spousal factors (e.g., education and health status) measured via survey. Results: In multivariate models controlling for patient factors and regional variation, spouses with lower educational attainment than their deceased spouse had decreased likelihood of hospice use (odds ratio [OR] = 0.58; 95% confidence interval [CI] = 0.40-0.82). Health of the spouse was not significantly associated with likelihood of decedent hospice use in adjusted models. Implications: Although the health of the surviving spouse was not associated with hospice use, their educational level was a predictor of hospice use. Spousal and family characteristics, including educational attainment, should be examined further in relation to disparities in hospice use. Efforts to increase access to high-quality end-of-life care for individuals with serious illness must also address the needs and concerns of caregivers and family. [ABSTRACT FROM AUTHOR]

Background: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicine's series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subject's death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care. Setting: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas. Conclusion: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of patients are living with multiple, chronic medical conditions and functional impairments that leave them homebound. Home-based primary and palliative care (HBPC) programs provide access to health care services for this vulnerable population. Homebound patients have high symptom burden upon program enrollment. Yet little is known as to how individual symptoms are managed at home, especially over longer time periods. Objectives: The purpose of this study was to determine whether high symptom burden decreases following HBPC enrollment. Methods: All patients newly enrolled in an HBPC program who reported at least one symptom on the Edmonton Symptom Assessment Scale (ESAS) were eligible for telephone ESAS follow-up. Patients received a comprehensive initial home visit and assessment by a physician with subsequent follow-up care, interdisciplinary care management including social work, and urgent in-home care as necessary. Multivariate linear mixed models with repeated measures were used to assess the impact of HBPC on pain, depression, anxiety, tiredness, and loss of appetite among patients with moderate to severe symptom levels at baseline. Results: One hundred forty patients were followed. Patient pain, anxiety, depression, and tiredness significantly decreased following intervention with symptom reductions seen at 3 weeks and maintained at 12 weeks. ( p<0.01) Loss of appetite trended toward an overall significant decrease and showed significant reductions at 12 week follow-up. Conclusion: In a chronically ill population of urban homebound, patient symptoms can be successfully managed in the home. Future work should continue to explore symptom assessment and management over time for the chronically ill homebound. [ABSTRACT FROM AUTHOR]

The author comments on a study published in this issue of the journal which examined differences in the relationship between caregiver depression and behavioral symptoms for daughter versus daughter-in-law (DIL) caregivers in dementia caregiving dyads in Korea. Topics discussed include the growing need for caregivers in an aging population and the importance of relationship quality in caregiving.

A letter to the editor is presented regarding the downstream effects of end-of-life care for older adults with serious illness and family health care utilization.