EMPOWER: A Multi-Site Pilot Trial to Reduce Distress in Surrogate Decision-Makers in the ICU.

CONTEXT: Efforts to reduce the psychological distress of surrogate decision-makers of critically ill patients have had limited success, and some have even exacerbated distress. OBJECTIVES: The aim of this study was to determine the feasibility, acceptability, and preliminary efficacy of EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), an ultra-brief (∼2-hour), 6-module manualized psychological intervention for surrogates. METHODS: Surrogates who reported significant anxiety and/or an emotionally close relationship with the patient (n=60) were randomized to receive EMPOWER or enhanced usual care (EUC) at one of three metropolitan hospitals. Participants completed evaluations of EMPOWER's acceptability and measures of psychological distress pre-intervention, immediately post-intervention, and at 1- and 3-month follow-up assessments. RESULTS: Delivery of EMPOWER appeared feasible, with 89% of participants completing all 6 modules, and acceptable, with high ratings of satisfaction (mean=4.5/5, SD = .90). Compared to EUC, intent-to-treat analyses showed EMPOWER was superior at reducing peritraumatic distress (Cohen's d = -0.21, small effect) immediately post-intervention and grief intensity (d = -0.70, medium-large effect), posttraumatic stress (d = -0.74, medium-large effect), experiential avoidance (d = -0.46, medium effect), and depression (d = -0.34, small effect) 3 months post-intervention. Surrogate satisfaction with overall critical care (d = 0.27, small effect) was higher among surrogates randomized to EMPOWER. CONCLUSIONS: EMPOWER appeared feasible and acceptable, increased surrogates' satisfaction with critical care, and prevented escalation of posttraumatic stress, grief, and depression 3 months later.

Patient-Caregiver Dyads & End-of-Life Care: Caregiver Personality Disrupts Gender-Based Norms.

CONTEXT: Gender and personality may individually impact end-of-life care. Men often receive more aggressive treatments than women near death, and personality - particularly openness - may be associated with increased care utilization when it diverges from traditional treatment norms. However, research has not examined the interaction of these variables in a dyadic context. OBJECTIVES: This study examined the dyadic effects of patient gender and caregiver personality on end-of-life care. METHODS: Using data from the VOICE randomized clinical trial, the present sample consisted of patient-caregiver dyads receiving outpatient care for advanced cancer in Sacramento and Western New York. Analyses assessed whether caregiver personality was associated with gender-based differences in patient chemotherapy or emergency department/inpatient visits in the 30 days before death. Logistic regression examined the interaction between caregivers' Big Five personality dimensions and patient gender while accounting for patient and caregiver demographic and health characteristics. RESULTS: Of a total of 134 patient-caregiver dyads, 19.4% (n = 26) of patients received chemotherapy and 47.8% (n = 64) had an emergency department/inpatient visit in the 30 days before death. Results demonstrated a significant interaction between caregiver openness and patient gender on receipt of chemotherapy (odds ratio = 0.07, p = 0.006). When caregivers were less open, men were more likely to receive chemotherapy near death, whereas when caregivers were more open, women were more likely to receive chemotherapy near death. CONCLUSION: Results suggest caregiver personality characteristics, particularly openness, might disrupt gender-based treatment norms at end-of-life. Findings demonstrate that patient and caregiver factors can interact to explain patient healthcare utilization.

A communication intervention to improve prognostic understanding and engagement in advance care planning among diverse advanced cancer patient-caregiver dyads: A pilot study.

OBJECTIVES: Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient-caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers. METHODS: Patients with advanced cancer and their caregivers (n = 22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP. RESULTS: TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives. SIGNIFICANCE OF RESULTS: TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.

Human Connection: Oncologist Characteristics and Behaviors Associated With Therapeutic Bonding With Latino Patients With Advanced Cancer.

PURPOSE: Therapeutic alliances (TAs) between oncologists and patients are bonds characterized by mutual caring, trust, and respect. We here relate oncologist characteristics and behaviors to TA among Latino and non-Latino patients with advanced cancer. METHODS: Participants included non-Latino oncologists (n = 41) and their Latino (n = 67) and non-Latino White (n = 90) patients with advanced cancer who participated in Coping with Cancer III, a multisite, US-based prospective cohort study of Latino/non-Latino disparities in end-of-life cancer care, conducted 2015-2019. Oncologist characteristics included age, sex, race, institution type, Spanish language proficiency, familismo practice style (emphasis on family) and clinical etiquette behaviors. Patient-reported TA was assessed using the average score of six items from The Human Connection scale. Hierarchical linear modeling (HLM) estimated effects of oncologist characteristics on TA. RESULTS: Of 157 patients, a majority were female (n = 92, 58.6%) and age younger than 65 years (n = 95, 60.5%). Most oncologists were male (n = 24, 58.5%), non-Latino White (n = 25, 61%), and age 40 years and older (n = 25, 61%). An adjusted HLM in the full sample showed that Latino patient ethnicity was associated with significantly lower TA (ß = -.25; P < .001). In an adjusted stratified HLM for TA, among Latino patients, oncologist familismo practice style (ß = .19; P = .012), preference using first names (ß = .25; P = .023), and greater Spanish fluency (ß = .11; P < .001) were positively associated with TA. In contrast, familismo practice style had no impact on TA for non-Latino White patients. CONCLUSION: Latino patients with advanced cancer had worse TAs with their oncologists versus non-Latino patients. Modifiable oncologist behaviors may be targeted in an intervention designed to improve the patient-physician relationship between oncologists and their Latino patients with advanced cancer.

Giving information strategically and transparently: A pilot trial of the Oncolo-GIST intervention to promote patients' prognostic understanding.

PURPOSE: Most patients with cancer lack the prognostic understanding necessary to make informed decisions. We tested the feasibility and acceptability of the Oncolo-GIST ("Giving Information Strategically and Transparently, GIST") intervention and explored its associations with patients' improved prognostic understanding. METHODS: The Oncolo-GIST intervention distills prognostic discussions into easy-to-understand talking points. Patients with metastatic cancers that progressed on ≥1 line of chemotherapy and not expected to survive 12 months (n = 31) were recruited from October 2020 through November 2022. We compared patients who discussed their progressive scans with an oncologist trained in the GIST technique or not (i.e., usual care). A primary outcome was prognostic understanding (e.g., patients reporting a life-expectancy of months) assessed within a week of the scan discussion visit. RESULTS: Oncologists (n = 4) appeared receptive to the Oncolo-GIST intervention and scored nearly perfectly on post-training tests of material mastery after a < 2-h tutorial. Post-scan discussion visit, 100% of patients who met with an Oncolo-GIST-trained clinician understood that their cancer was considered incurable (a 31% improvement from pre-visit) compared with 91% of patients meeting with usual care oncologists (an 18% improvement); 33% of patients who met with an Oncolo-GIST-trained oncologist understood that they likely had months, not years, compared to 18% in the usual care group. No statistically significant differences emerged for these changes, nor for therapeutic alliance, anxiety, or depression scores between groups. CONCLUSION: Oncolo-GIST appears to be an easily learned approach to improve prognostic understanding that neither undermines therapeutic alliances nor increases patients' anxiety or depressive symptoms. Efficacy testing in a larger trial is warranted.

Planning for Your Advance Care Needs (PLAN): A Communication Intervention to Improve Advance Care Planning among Latino Patients with Advanced Cancer.

BACKGROUND: The goal of this study was to develop and optimize an intervention designed to address barriers to engagement in advance care planning (ACP) among Latino patients with advanced cancer. The resulting intervention, titled Planning Your Advance Care Needs (PLAN), is grounded in theoretical models of communication competence and sociocultural theory. MATERIALS AND METHODS: An initial version of the PLAN manual was developed based on a prior intervention, Ca-HELP, that was designed to improve communication around pain among cancer patients. PLAN uses this framework to coach patients on how to plan for and communicate their end-of-life care needs through ACP. In the present study, feedback was obtained from key stakeholders (n = 11 patients, n = 11 caregivers, n = 10 experts) on this preliminary version of the PLAN manual. Participants provided ratings of acceptability and feedback around the intervention content, format, design, modality, and delivery through quantitative survey questions and semi-structured qualitative interviews. RESULTS: Results indicated that the PLAN manual was perceived to be helpful and easy to understand. All stakeholder groups liked the inclusion of explicit communication scripts and guidance for having conversations about ACP with loved ones and doctors. Specific feedback was given to modify PLAN to ensure it was optimized and tailored for Latino patients. Some patients noted reviewing the manual motivated engagement in ACP. CONCLUSIONS: Feedback from stakeholders resulted in an optimized, user-centered version of PLAN tailored to Latino patients. Future research will examine the acceptability, feasibility, and potential efficacy of this intervention to improve engagement in ACP.

Associations between Latino ethnicity and the use of emotional support and completion of advance directives.

OBJECTIVES: Latino patients have been shown to engage in advance care planning (ACP) at much lower rates than non-Latino White patients. Coping strategies, such as the use of emotional support, may differentially relate to engagement in ACP among Latino and non-Latino patients. The present study sought to examine the moderating effect of ethnicity on the relationship between the use of emotional support as a coping strategy and completion of advance directives. METHODS: The present study employed a weighted sample (Nw = 185) of Latino and non-Latino White patient participants in Coping with Cancer III, an National Institutes of Health-sponsored, multisite, longitudinal, observational cohort study of patients with advanced cancer and their informal caregivers and oncology providers designed to evaluate Latino/non-Latino disparities in ACP and end-of-life cancer care. Main and interaction effects of Latino ethnicity and use of emotional support on patient use of advance directives were estimated as odds ratios. RESULTS: Use of emotional support was associated with dramatically lower do-not-resuscitate (DNR) order completion to a greater extent among Latino as compared to non-Latino patients (interaction AOR = 0.33, p = 0.005). Interaction effects were not statistically significant for living will or health-care proxy form completion. SIGNIFICANCE OF RESULTS: Use of emotional support is associated with lower odds of completing DNRs among Latino than among non-Latino patients. Seeking and/or receiving emotional support may deter Latino patients from completing DNR orders. Research is needed to address both emotional needs and practicalities to ensure high quality end-of-life care among Latino patients with cancer.

Advance care planning (ACP) to promote receipt of value-concordant care: Results vary according to patient priorities.

BACKGROUND: Benefits of advance care planning (ACP) have recently been questioned by experts, but ACP is comprised of discrete activities. Little is known about which, if any, ACP activities are associated with patients' greater likelihood of receiving value-concordant end-of-life (EoL) care. OBJECTIVES: To determine which ACP activities [Do-Not-Resuscitate (DNR) order completion, designation of a healthcare proxy (HCP), and/or EoL discussions with physicians], individually and in combination, are associated with the greatest likelihood of receiving value-concordant care, and how results may vary based on patient-reported EoL care priorities. METHODS: Data from 2 federally-funded, multisite, prospective cohort studies of EoL cancer care from 2002-2019 were analyzed. Cancer patients (N = 278) with metastatic disease refractory to chemotherapy were interviewed for a baseline assessment and followed prospectively until death. Interviews regarding patient priorities occurred a median of 111 days prior to death; data regarding EoL medical care were collected post-mortem from caregiver interviews and medical record abstraction. Patients who 1) prioritized life-extending care, and then received life-extending care (or avoided hospice care), or 2) prioritized comfort-focused care, and then avoided life-extending care (or received hospice care) in the last week of life, were coded as receiving value-concordant care. RESULTS: After inverse propensity score weighting, the ACP combination associated with the largest proportion of patients receiving value-concordant care was DNR, HCP, and EoL discussions (87% vs. 64% for no ACP activities; OR = 3.91, p = 0.006). In weighted analyses examining each ACP activity individually, DNR orders were associated with decreased likelihood of life-extending care (89% vs. 75%; p = 0.005) and EoL discussions were associated with increased likelihood of hospice care (77% vs. 55%; p = 0.002) among patients prioritizing comfort. ACP activities were not significantly associated with increased likelihood of receiving value-concordant care among patients prioritizing life-extension. CONCLUSIONS AND RELEVANCE: For patients who prioritize comfort, EoL discussions with physicians and completion of DNR orders may improve odds of receiving value-concordant EoL care. For patients who prioritize life-extension, ACP does not appear to improve odds of receiving value-concordant EoL care.

Associations of financial hardship with suicidal ideation among bereaved cancer caregivers.

PURPOSE: To examine associations between financial hardship and suicidal ideation among bereaved informal caregivers of cancer patients. DESIGN: Longitudinal cohort study. SAMPLE: 173 informal caregivers of advanced cancer patients. METHODS: Caregivers were interviewed a median 3.1 months before and 6.5 months after the death of the patient they cared for. Logistic regression models estimated associations between caregiver-perceived pre-loss and post-loss financial hardship due to the patient's illness and post-loss suicidal ideation. FINDINGS: Suicidal ideation was identified in 12% (n = 21) of the sample pre-loss, rising to 20% (n = 34) post-loss (p=.049). Pre-loss financial hardship (OR = 3.4, 95% CI = 1.5-7.4, p=.002) and post-loss financial hardship (OR = 3.7, 95% CI = 1.7-8.2, p=.001) were each bivariately associated with post-loss suicidal ideation. In multivariable models adjusting for pre-loss suicidal ideation, psychiatric diagnosis, and spousal relationship to the patient, post-loss financial hardship remained significantly associated with post-loss suicidal ideation (AOR = 3.6, 95% CI = 1.4-8.8, p=.006). CONCLUSION: Among a cohort of cancer caregivers followed from active caregiving into bereavement, post-loss financial hardship was associated with suicidal ideation in bereavement. IMPLICATIONS: Economic policies that financially benefit caregivers may represent promising strategies for preventing suicidal thoughts and behaviors.

Grief and Bereavement in the Latino/a Community: A Literature Synthesis and Directions for Future Research.

Introduction: Bereavement and grief are social phenomena influenced by a multitude of cultural factors. Prior studies of bereavement adjustment have primarily focused on bereaved survivors who identify racially as white; knowledge of the experience of grief and bereavement among racial/ethnic and other minority groups, particularly among Latino/a groups, in the United States is limited. Objective: The purpose of this review is to synthesize the literature documenting the bereavement experiences of the Latino/a community, evaluate the strength of the current evidence, and provide recommendations to guide future research. Method: A narrative review of research on grief and bereavement in the Latino/a community published between 1990 and 2021. Two authors used a thematic, deductive approach to categorize emergent prevalent themes from the literature and used The Grading of Recommendations Assessment, Development, and Evaluation (GRADE) and The Oxford Center for Evidence-Based Medicine-Evidence Quality Rating Scale (OCEBM) approaches to evaluate the strength of the qualitative and quantitative reports reviewed. Results: Searches revealed 26 reports that were categorized into six themes: cultural values, mourning rituals, immigration, spirituality, disparities related to the COVID-19 pandemic, and the effects of COVID-19 on Latino/a communities. Our evaluation concludes that the evidence in this area is weak, with limited methodologically rigorous research examining the influence of culture on bereavement among Latino/a groups. Conclusion: Research is needed to identify Latino/a groups' mental health, cultural, social, and family needs and how fulfillment of mourning rituals and other cultural factors may promote or impede bereavement adjustment. Investigation into factors that may protect bereaved survivors against adverse mental health outcomes is also needed. A better understanding of Latino/a grief and bereavement is a step toward the development of culturally competent interventions designed to promote the mental health and psychosocial adjustment of Latino/a mourners.

Association between immigrant status and advanced cancer patients' location and quality of death.

BACKGROUND: Cancer patients often prefer to die at home, a location associated with better quality of death (QoD). Several studies demonstrate disparities in end-of-life care among immigrant populations in the United States. This study aimed to evaluate how immigrant status affects location and quality of death among patients with advanced cancer in the United States. METHODS: Data were derived from Coping with Cancer, a federally funded multi-site prospective study of advanced cancer patients and caregivers. The sample of patients who died during the study period was weighted (Nw  = 308) to reduce statistically significant differences between immigrant (Nw  = 49) and nonimmigrant (Nw  = 259) study participants. Primary outcomes were location of death, death at preferred location, and poor QoD. RESULTS: Analyses adjusted for covariates indicated that patients who were immigrants were more likely to die in a hospital than home (adjusted odds ratio [AOR], 3.33; 95% confidence interval [CI], 1.65-6.71) and less likely to die where they preferred (AOR, 0.42; 95% CI, 0.20-0.90). Furthermore, immigrants were more likely to have poor QoD (AOR, 5.47; 95% CI, 2.70-11.08). CONCLUSIONS: Immigrants, as compared to nonimmigrants, are more likely to die in hospital settings, less likely to die at their preferred location, and more likely to have poor QoD. LAY SUMMARY: Cancer patients typically prefer to die in their own homes, which is associated with improved quality of death. However, disparities in end-of-life care among immigrant populations in the United States remain significant. Our study found that immigrants are less likely to die in their preferred locations and more likely to die in hospital settings, resulting in poorer quality of death.

Validation of the prolonged grief scale (PG-13) and investigation of the prevalence and risk factors of prolonged grief disorder in Turkish bereaved samples.

The aim of this study was to validate the Turkish version of the Prolonged Grief Scale (PG-13) and to determine the prevalence and predictors of prolonged grief disorder (PGD). Data were gathered from two independent samples of 306 (Study 1) and 271 (Study 2) bereaved adults to determine if findings in one sample could be replicated in the other. The results supported the one-factor structure of PG-13. PGD prevalence rates were 11.4% in Study 1 and 10% in Study 2. Lower level meaning reconstruction and unnatural cause of death were found as risk factors for the PGD diagnosis in both studies.

A micro-sociological theory of adjustment to loss.

Although grief is a reaction to a social loss, it has been viewed almost exclusively through the lens of individual psychology and not sociology. In this article, we suggest that more attention to sociological aspects of grief is warranted. We propose a micro-sociological theory of bereavement and grief to complement, not replace, psychological perspectives. We assert that bereavement represents a state of loss-associated social deprivations (e.g. social disconnection). Furthermore, we postulate that addressing social deprivations (e.g. enhancing social connection) will lessen severity of distressing, disabling grief and, thereby, promote adjustment to loss. Future research is needed to test our theory and the hypotheses that follow from it in the service of promoting adaptation to bereavement.

Development and preliminary evaluation of EMPOWER for surrogate decision-makers of critically ill patients.

OBJECTIVE: The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates' mental health and patient outcomes. METHOD: Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15-20 min modules, totaling 1.5-2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments. RESULTS: Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = -0.41), peritraumatic distress (d = -0.24), and experiential avoidance (d = -0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = -0.94), depression (d = -0.23), anxiety (d = -0.29), and experiential avoidance (d = -0.30). SIGNIFICANCE OF RESULTS: Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.

Associations between beta-blocker use and psychological distress in bereaved adults with cardiovascular conditions.

The death of a close other is a major life stressor that disrupts mental and physical health. Beta-blocker medications are indicated treatments for cardiovascular conditions that may also mitigate psychological distress in the context of stressors by reducing adrenergic activity. We sought to examine observational links between beta-blocker medication use and psychological distress during bereavement. Using publicly available data from the Midlife in the United States Refresher study, we examined associations between beta-blocker use and general distress, depressive symptoms, and anxiety symptoms (as measured by the Mood and Anxiety Symptom Questionnaire) among bereaved adults with cardiovascular conditions (n = 161) using t-tests and regression models. Beta-blocker users reported lower levels of anxiety-related general distress (b = -2.49, SE = 0.88, p = 0.005) and depression-related general distress than non-users (b = -2.39, SE = 1.14, p = 0.039) in multivariate linear regression models adjusting for demographic characteristics, mental health treatments, time since loss and comorbid health conditions. These observed links between beta-blockers and lower psychological distress in bereavement warrant further investigation in prospective and randomized studies, as beta-blockers could be a scalable intervention for mitigating distress following loss.

Suffering and Symptoms At the End of Life in ICU Patients Undergoing Renal Replacement Therapy.

BACKGROUND: We know little about the end-of-life suffering and symptoms of intensive care unit (ICU) decedents in general and those who undergo renal replacement therapy (RRT) in particular. OBJECTIVES: To examine differences in end-of-life suffering and various symptoms' contribution to suffering between ICU decedents who did not undergo RRT, those who underwent RRT for end-stage kidney disease (ESKD), and those who underwent RRT for acute kidney injury (AKI). METHODS: This is a cross-sectional study conducted at a quaternary-level referral hospital September 2015-March 2017. Nurses completed interviews about ICU patients' suffering and symptoms in their final week. We dichotomized overall suffering into elevated and non-elevated and each symptom as contributing or not to a patient's suffering. RESULTS: Sixty-four nurses completed interviews on 165 patients. Median patient age was 67 years (interquartile range 57, 78); 41% were female. In a multivariable model, undergoing RRT for AKI (odds ratio [OR] 2.95, 95% confidence interval [CI] 1.34-6.49) was significantly associated with elevated suffering compared to no RRT; undergoing RRT for ESKD was not. Adjusting for length of stay, AKI-RRT patients were more likely than non-RRT patients to have fecal incontinence (OR 2.21, 95% CI 1.00-4.93), painful broken skin (OR 2.41, 95% CI 1.14-5.12), and rashes (OR 3.61, 95% CI 1.35-9.67) contributing to their suffering. CONCLUSIONS: Undergoing RRT for AKI was associated with elevated suffering in the last week of life in ICU decedents. Painful broken skin, rashes, and fecal incontinence were more likely to contribute to suffering in AKI-RRT patients than in non-RRT patients. How to reduce suffering associated with AKI-RRT in ICU patients merits further study.