Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.

Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers' perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, "local" hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

Pain Management Education for Rural Hospice Family Caregivers: A Pilot Study With Embedded Implementation Evaluation.

BACKGROUND: Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. OBJECTIVE: To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. METHODS: We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. RESULTS: Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. CONCLUSION: A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

Insomnia Symptoms Among Hospice Family Caregivers: Prevalence and Association with Caregiver Mental and Physical Health, Quality of Life, and Caregiver Burden.

BACKGROUND: Poor sleep exacerbates mental health problems and reduces quality-of-life (QOL) but prevalence of insomnia symptoms among hospice family caregivers and associations of poor sleep with caregiver health and QOL outcomes are not known. OBJECTIVE: To describe prevalence of insomnia symptoms among hospice family caregivers and compare anxiety, depression, self-rated health, QOL, and caregiver burden between hospice family caregivers with and without insomnia symptoms. METHODS: Descriptive sub-study using data collected during baseline interviews of hospice family caregivers involved in a randomized clinical trial in Midwestern United States (xxxxxxxx). Caregivers were dichotomized based on Insomnia Severity Index (ISI) scores (8+ indicated insomnia symptoms). RESULTS: Among 57 hospice family caregivers, the mean ISI score was 8.2; nearly half (49.1%) experienced insomnia symptoms. Compared to caregivers without insomnia symptoms, caregivers with insomnia symptoms reported 2.4 times greater mean anxiety scores (4.7 vs 11.4); 3.5 times greater mean depression scores (3.1 vs 10.7); 2.1 times greater caregiver burden scores (5.6 vs 11.8); and 1.3 times lower self-rated health (3.5 vs 2.8); 1.3 times lower total QOL scores (29.3 vs 22.6); including differences in emotional QOL (7.9 vs 2.2), social QOL (7.2 vs 3.0), and physical QOL (7.4 vs 5.3). CONCLUSIONS: Hospice family caregivers experience high prevalence of insomnia symptoms; caregivers with insomnia symptoms report worse anxiety, depression, caregiver burden, QOL, self-rated health. Clinicians must screen hospice caregivers for poor sleep and mental health and offer supportive interventions that improve their sleep and health. Policy makers must expand hospice benefits to better support family caregivers.

"It was terrible, I didn't sleep for two years": A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life.

BACKGROUND: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. AIM: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers' wellbeing in the context of caregiver health and live-in status. DESIGN: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. SETTING/PARTICIPANTS: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. RESULTS: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described "fair" or "poor" sleep quality, with "interrupted" sleep and frequent night-waking due to "on-call" "vigilance" and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. CONCLUSION: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Older Adult Engagement With Facebook® Interventions: A Challenge for Nursing Research.

Facebook® is a popular platform for older adults, especially as they try to stay in contact with their family around the country. It is also a popular platform for hosting online support groups. The readily available, socially acceptable, and free platform holds many advantages not only for older adults but also for nurse researchers designing and implementing interventions for older adults. The literature is void of proven methods to measure individual engagement with the Facebook platform. The current article describes efforts to develop a measurement process and evaluate the impact that engagement with Facebook has on improved mental health outcomes for older adults. Scores were severely skewed and ranged from no engagement to very high engagement. Engagement differed based on sex, race, and living arrangements with patients. Further work in this area is needed if nurse researchers are to consider the role of engagement in social media interventions. [Journal of Gerontological Nursing, 48(7), 10-17.].

Hospice Enrollment, Future Hospitalization, and Future Costs Among Racially and Ethnically Diverse Patients Who Received Palliative Care Consultation.

BACKGROUND: Palliative care consultation to discuss goals-of-care ("PCC") may mitigate end-of-life care disparities. OBJECTIVE: To compare hospitalization and cost outcomes by race and ethnicity among PCC patients; identify predictors of hospice discharge and post-discharge hospitalization utilization and costs. METHODS: This secondary analysis of a retrospective cohort study assessed hospice discharge, do-not-resuscitate status, 30-day readmissions, days hospitalized, ICU care, any hospitalization cost, and total costs for hospitalization with PCC and hospitalization(s) post-discharge among 1,306 Black/African American, Latinx, White, and Other race PCC patients at a United States academic hospital. RESULTS: In adjusted analyses, hospice enrollment was less likely with Medicaid (AOR = 0.59, P = 0.02). Thirty-day readmission was less likely among age 75+ (AOR = 0.43, P = 0.02); more likely with Medicaid (AOR = 2.02, P = 0.004), 30-day prior admission (AOR = 2.42, P < 0.0001), and Black/African American race (AOR = 1.57, P = 0.02). Future days hospitalized was greater with Medicaid (Coefficient = 4.49, P = 0.001), 30-day prior admission (Coefficient = 2.08, P = 0.02), and Black/African American race (Coefficient = 2.16, P = 0.01). Any future hospitalization cost was less likely among patients ages 65-74 and 75+ (AOR = 0.54, P = 0.02; AOR = 0.53, P = 0.02); more likely with Medicaid (AOR = 1.67, P = 0.01), 30-day prior admission (AOR = 1.81, P = 0.0001), and Black/African American race (AOR = 1.40, P = 0.02). Total future hospitalization costs were lower for females (Coefficient = -3616.64, P = 0.03); greater with Medicaid (Coefficient = 7388.43, P = 0.01), 30-day prior admission (Coefficient = 3868.07, P = 0.04), and Black/African American race (Coefficient = 3856.90, P = 0.04). Do-not-resuscitate documentation (48%) differed by race. CONCLUSIONS: Among PCC patients, Black/African American race and social determinants of health were risk factors for future hospitalization utilization and costs. Medicaid use predicted hospice discharge. Social support interventions are needed to reduce future hospitalization disparities.

Longitudinal Trajectories and Correlates of Post-Caregiving Depressive Symptoms in Former Caregivers of Persons With Alzheimer's Disease or a Related Dementia.

BACKGROUND: Despite the end of caregiving responsibilities, caregivers' depressive symptoms continue following the death of the care recipient with Alzheimer's disease or a related dementia (ADRD). However, long-term patterns of depressive symptoms among ADRD caregivers following the care recipient's death remain poorly understood. PURPOSE: To explore longitudinal trajectories and correlates of depressive symptoms in former caregivers of persons with ADRD following the care recipient's death. METHODS: Using the modification of Cooper's framework presented by Whittemore and Knafl, an integrative review was conducted in 4 stages: problem identification, literature search, data evaluation, and data analysis. The literature search was performed using CINAHL, PubMed, and PsycINFO databases. Articles were included if they were published in English between January 1994 and March 2021, reported in peer-reviewed sources, and described findings of original research related to factors, correlates, or longitudinal patterns of depressive symptoms in former family caregivers following the death of the care recipient with ADRD. RESULTS: Longitudinal trajectories of depressive symptoms were categorized into 3 overarching themes: (1) gradual reduction of depressive symptoms during the first year post-caregiving; (2) failure of depressive symptoms to fully resolve after the first year post-caregiving; and (3) individualized depressive symptom trajectories. Correlates of post-caregiving depressive symptoms were categorized into 3 themes: (1) caregiver personal characteristics; (2) extrinsic factors; and (3) coping resources. CONCLUSION: These findings indicated that screening for depression and psychosocial support are high priorities during the first year post-caregiving to facilitate early identification of at-risk caregivers and improve mental health outcomes in this population.

Anxiety, Depression, Quality of Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers.

Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.

Top Ten Tips Palliative Care Clinicians Should Know About Delivering Antiracist Care to Black Americans.

Racial disparities, including decreased hospice utilization, lower quality symptom management, and poor-quality end-of-life care have been well documented in Black Americans. Improving health equity and access to high-quality serious illness care is a national palliative care (PC) priority. Accomplishing these goals requires clinician reflection, engagement, and large-scale change in clinical practice and health-related policies. In this article, we provide an overview of key concepts that underpin racism in health care, discuss common serious illness disparities in Black Americans, and propose steps to promote the delivery of antiracist PC.

"I'm Dealing With That": Illness Concerns of African American and White Cancer Patients While Undergoing Active Cancer Treatments.

BACKGROUND: National oncology guidelines recommend early integration of palliative care for patients with cancer. However, drivers for this integration remain understudied. Understanding illness concerns at the time of cancer treatment may help facilitate integration earlier in the cancer illness trajectory. OBJECTIVE: To describe cancer patients' concerns while undergoing cancer treatment, and determine if concerns differ among African Americans and Whites. METHODS: A 1-time, semi-structured qualitative interview was conducted with a purposive subsample of cancer patients participating in a larger study of illness concerns. Eligible patients were undergoing cancer treatments and had self-reported moderate-to-severe pain in the last week. Analysis encompassed a qualitative descriptive approach with inductive thematic analysis. RESULTS: Participants (16 African American, 16 White) had a median age of 53 and were predominantly females (72%) with stage III/IV cancer (53%). Illness concerns were largely consistent across participants and converged on 3 themes: symptom experience (pain, options to manage pain), cancer care delivery (communication, care coordination and care transitions), and practical concerns (access to community and health system resources, financial toxicity). CONCLUSIONS: The findings extend the scope of factors that could be utilized to integrate palliative care earlier in the cancer illness trajectory, moving beyond the symptoms- and prognosis-based triggers that typify current referrals to also consider diverse logistical concerns. Using this larger set of concerns aids anticipatory risk mitigation and planning (e.g. care transitions, financial toxicity), helps patients receive a larger complement of support services, and builds cancer patients' capacity toward a more patient-centered treatment and care experience.

Patient Risk Factor Profiles Associated With the Timing of Goals-of-Care Consultation Before Death: A Classification and Regression Tree Analysis.

BACKGROUND: Early palliative care consultation ("PCC") to discuss goals-of-care benefits seriously ill patients. Risk factor profiles associated with the timing of conversations in hospitals, where late conversations most likely occur, are needed. OBJECTIVE: To identify risk factor patient profiles associated with PCC timing before death. METHODS: Secondary analysis of an observational study was conducted at an urban, academic medical center. Patients aged 18 years and older admitted to the medical center, who had PCC, and died July 1, 2014 to October 31, 2016, were included. Patients admitted for childbirth or rehabilitationand patients whose date of death was unknown were excluded. Classification and Regression Tree modeling was employed using demographic and clinical variables. RESULTS: Of 1141 patients, 54% had PCC "close to death" (0-14 days before death); 26% had PCC 15 to 60 days before death; 21% had PCC >60 days before death (median 13 days before death). Variables associated with receiving PCC close to death included being Hispanic or "Other" race/ethnicity intensive care patients with extreme illness severity (85%), with age <46 or >75 increasing this probability (98%). Intensive care patients with extreme illness severity were also likely to receive PCC close to death (64%) as were 50% of intensive care patients with less than extreme illness severity. CONCLUSIONS: A majority of patients received PCC close to death. A complex set of variable interactions were associated with PCC timing. A systematic process for engaging patients with PCC earlier in the care continuum, and in intensive care regardless of illness severity, is needed.

Goals-of-Care Consultation Associated With Increased Hospice Enrollment Among Propensity-Matched Cohorts of Seriously Ill African American and White Patients.

CONTEXT: African Americans are less likely to receive hospice care and more likely to receive aggressive end-of-life care than whites. Little is known about how palliative care consultation (PCC) to discuss goals of care is associated with hospice enrollment by race. OBJECTIVES: To compare enrollment in hospice at discharge between propensity-matched cohorts of African Americans with and without PCC and whites with and without PCC. METHODS: Secondary analysis of a retrospective cohort study at a high-acuity hospital; using stratified propensity-score matching for 35,154 African Americans and whites aged 18+ admitted for conditions other than childbirth or rehabilitation, who were not hospitalized at end of study, and did not die during index hospitalization (hospitalization during which first PCC occurred). RESULTS: Compared with African Americans without PCC, African Americans with PCC were 15 times more likely to be discharged to hospice from index hospitalization (2.4% vs. 36.5%; P < 0.0001). Compared with white patients without PCC, white patients with PCC were 14 times more likely to be discharged to hospice from index hospitalization (3.0% vs. 42.7%; P < 0.0001). CONCLUSION: In propensity-matched cohorts of seriously ill patients, PCC to discuss goals of care was associated with significant increases in hospice enrollment at discharge among both African Americans and whites. Research is needed to understand how PCC influences decision making by race, how PCC is associated with postdischarge hospice outcomes such as disenrollment and hospice lengths of stay, and if PCC is associated with improving racial disparities in end-of-life care.

Model of Empathic Pain Assessment and Treatment in Persons With Dementia.

The current article presents an evidence-based model for understanding clinical empathy's relationship with the assessment and treatment of pain in persons with advanced dementia. A literature review informed creation of an interdisciplinary conceptual framework of clinician empathy in pain assessment and treatment among persons with advanced dementia. Driven by observation of behaviors indicating pain in persons with dementia unable to self-report, the model represents the cognitive, affective, ethical, and behavioral components of clinical empathy involved in assessing and treating pain, relevant patient outcomes, and contextual factors influencing empathy and outcomes; and provides a framework for testing clinical empathy interventions to improve adverse outcomes in persons with advanced dementia. Understanding the relationship between clinician empathy and the assessment and treatment of pain in persons with advanced dementia may improve care quality and help reduce pain behaviors in this patient population. This model may be used to inform pain research in persons with dementia and develop clinical interventions and clinician education programs. [Research in Gerontological Nursing, 13(5), 264-276.].

Goals-of-Care Consultations Are Associated with Lower Costs and Less Acute Care Use among Propensity-Matched Cohorts of African Americans and Whites with Serious Illness.

Background: African Americans receive more aggressive end-of-life care than Whites. Little is known about how palliative care consultation to discuss goals-of-care ("PCC") is associated with acute care utilization and costs by race. Objective: To compare future acute care costs and utilization between propensity-matched cohorts of African Americans with and without PCC, and Whites with and without PCC. Design: Secondary analysis of a retrospective cohort study. Setting/Subjects: Thirty-five thousand one hundred and fifty-four African Americans and Whites age 18+ admitted for conditions other than childbirth or rehabilitation, who were not hospitalized at the end of the study, and did not die during index hospitalization (hospitalization during which the first PCC occurred). Measurements: Accumulated mean acute care costs and utilization (30-day readmissions, future hospital days, future intensive care unit [ICU] admission, future number of ICU days) after discharge from index hospitalization. Results: No significant difference between African Americans with or without PCC in mean future acute care costs ($11,651 vs. $15,050, p = 0.09), 30-day readmissions (p = 0.58), future hospital days (p = 0.34), future ICU admission (p = 0.25), or future ICU days (p = 0.30). There were significant differences between Whites with PCC and those without PCC in mean future acute care costs ($8,095 vs. $16,799, p < 0.001), 30-day readmissions (10.2% vs. 16.7%, p < 0.0001), and future days hospitalized (3.7 vs. 6.3 days, p < 0.0001). Conclusions: PCC decreases future acute care costs and utilization in Whites and, directionally but not significantly, in African Americans. Research is needed to explain why utilization and cost disparities persist among African Americans despite PCC.

Associations Among End-of-Life Discussions, Health-Care Utilization, and Costs in Persons With Advanced Cancer: A Systematic Review.

BACKGROUND: Aggressive end-of-life (EOL) care is associated with lower quality of life and greater regret about treatment decisions. Higher EOL costs are also associated with lower quality EOL care. Advance care planning and goals-of-care conversations ("EOL discussions") may influence EOL health-care utilization and costs among persons with cancer. OBJECTIVE: To describe associations among EOL discussions, health-care utilization and place of death, and costs in persons with advanced cancer and explore variation in study measures. METHODS: A systematic review was conducted using PubMed, Embase, and CINAHL. Twenty quantitative studies published between January 2012 and January 2019 were included. RESULTS: End-of-life discussions are associated with lower health-care costs in the last 30 days of life (median US$1048 vs US$23482; P < .001); lower likelihood of acute care at EOL (odds ratio [(OR] ranging 0.43-0.69); lower likelihood of intensive care at EOL (ORs ranging 0.26-0.68); lower odds of chemotherapy near death (ORs 0.41, 0.57); lower odds of emergency department use and shorter length of hospital stay; greater use of hospice (ORs ranging 1.79 to 6.88); and greater likelihood of death outside the hospital. Earlier EOL discussions (30+ days before death) are more strongly associated with less aggressive care outcomes than conversations occurring near death. CONCLUSIONS: End-of-life discussions are associated with less aggressive, less costly EOL care. Clinicians should initiate these discussions with patients having cancer earlier to better align care with preferences.