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.

Advance Care Planning Practice Patterns Before and During a Pandemic.

Introduction: The COVID-19 pandemic resulted in introspection of the United States health care infrastructure, especially with advance care planning (ACP). Methods: This is a retrospective chart review assessing the frequency of ACP discussions and formal documents reflecting ACP wishes in an outpatient palliative medicine (PM) practice. The study site was at University Medical Center New Orleans from pre-COVID-19 surge (November 2019-February 2020) to months during and post-COVID-19 surge (March-April 2020). Results: Results showed an increase in ACP discussions during the post-COVID-19 months. Patients seen during the surge and post-COVID-19 months were more likely to discuss medical power of attorney (odds ratio [OR] = 1.78, p = 0.045) and preferred code status (OR = 2.82, p < 0.001). Conclusion: Our study showed that more ACP discussions were conducted post-COVID-19 versus pre-COVID-19. However, formal documents reflecting these wishes were lacking. These results can help guide ACP use in crisis periods and improve understanding of ACP discussions in an outpatient PM clinic.

Cultivating community-based participatory research (CBPR) to respond to the COVID-19 pandemic: an illustrative example of partnership and topic prioritization in the food services industry.

BACKGROUND: As an illustrative example of COVID-19 pandemic community-based participatory research (CBPR), we describe a community-academic partnership to prioritize future research most important to people experiencing high occupational exposure to COVID-19 - food service workers. Food service workers face key challenges surrounding (1) health and safety precautions, (2) stress and mental health, and (3) the long-term pandemic impact. METHOD: Using CBPR methodologies, academic scientists partnered with community stakeholders to develop the research aims, methods, and measures, and interpret and disseminate results. We conducted a survey, three focus groups, and a rapid qualitative assessment to understand the three areas of concern and prioritize future research. RESULTS: The survey showed that food service employers mainly supported basic droplet protections (soap, hand sanitizer, gloves), rather than comprehensive airborne protections (high-quality masks, air quality monitoring, air cleaning). Food service workers faced challenging decisions surrounding isolation, quarantine, testing, masking, vaccines, and in-home transmission, described anxiety, depression, and substance use as top mental health concerns, and described long-term physical and financial concerns. Focus groups provided qualitative examples of concerns experienced by food service workers and narrowed topic prioritization. The rapid qualitative assessment identified key needs and opportunities, with help reducing in-home COVID-19 transmission identified as a top priority. COVID-19 mitigation scientists offered recommendations for reducing in-home transmission. CONCLUSIONS: The COVID-19 pandemic has forced food service workers to experience complex decisions about health and safety, stress and mental health concerns, and longer-term concerns. Challenging health decisions included attempting to avoid an airborne infectious illness when employers were mainly only concerned with droplet precautions and trying to decide protocols for testing and isolation without clear guidance, free tests, or paid sick leave. Key mental health concerns were anxiety, depression, and substance use. Longer-term challenges included Long COVID, lack of mental healthcare access, and financial instability. Food service workers suggest the need for more research aimed at reducing in-home COVID-19 transmission and supporting long-term mental health, physical health, and financial concerns. This research provides an illustrative example of how to cultivate community-based partnerships to respond to immediate and critical issues affecting populations most burdened by public health crises.

Community-based N95 distribution during the COVID-19 Omicron BA.1 surge: feasibility, 1-month utilization, and price implications.

Masks and other non-pharmaceutical interventions can complement vaccines and treatments as a part of multilayered mitigation to reduce the burden of COVID-19 in high-risk settings like surges. Although N95s provide greater protection than cloth and procedure masks against airborne infectious illnesses, few people used N95s historically, potentially due to lack of familiarity and cost. The study was designed to examine the feasibility of distributing N95s during a COVID-19 surge. A follow-up survey summarized mask behavior. The investigators aimed to distribute 2,500 N95s to 500 adults in 5-packs with informational handouts at community locations during the COVID-19 Omicron BA.1 surge in New Orleans, Louisiana. A 1-month follow-up survey assessed utilization, safety perceptions, social diffusion of awareness of N95s, and purchase intentions. The investigators successfully distributed all 2,500 N95s during the peak of the BA.1 surge (December 13, 2021 to January 17, 2022). At 1-month follow-up, 96.7% of participants had tried an N95. They utilized an average of 3.42 (68.4%) of the five N95s, felt safer wearing N95s (Ps < 0.0001), discussed N95s with others (80.4%), and would wear N95s again if free (87.9%). Future utilization intentions were price sensitive. Communities will readily use public health tools like N95s when at risk and offered for free with useful information. Cost was identified as a key barrier to sustained utilization. Findings have immediate public policy implications for reducing national, regional, and organizational surges. The research provides an illustrative example of the importance of behavioral science in responding to public health crises.

Masks are a part of a comprehensive approach to reducing the burden of COVID-19 surges. High-quality masks, called N95 masks in the USA, provide better protection than cloth or blue procedure masks. Most people have not used N95s due to a lack of familiarity or cost. We tested a program to distribute N95s to the community during a COVID-19 surge. Specifically, we gave 2,500 N95s to 500 adults in 5-packs with informational handouts during the COVID-19 Omicron BA.1 surge in New Orleans, Louisiana. We requested recipients complete a 1-month follow-up survey. Overall, we were successful in distributing all 2,500 N95s during the peak of the winter 2021­2022 surge. By 1-month follow-up, nearly all recipients had tried an N95 and had used nearly 70% of the total given. They felt safer, discussed the masks with others, and would wear them again if free. Cost was a key barrier to using N95s in the future. After our study, the USA federal government implemented a program to distribute free N95s, but there are no policy plans to distribute free N95s during future winter surges or in response to vaccine-evading variants. Free N95 distribution programs would be popular and reduce the burden of COVID-19.

Palliative care use and utilization determinants among patients treated for advanced stage lung cancer care in the community and academic medical setting.

PURPOSE: Despite clinical guidelines, palliative care is underutilized during advanced stage lung cancer treatment. To inform interventions to increase its use, patient-level barriers and facilitators (i.e., determinants) need to be characterized, especially among patients living in rural areas or those receiving treatment outside academic medical centers. METHODS: Between 2020 and 2021, advanced stage lung cancer patients (n = 77; 62% rural; 58% receiving care in the community) completed a one-time survey assessing palliative care use and its determinants. Univariate and bivariate analyses described palliative care use and determinants and compared scores by patient demographic (e.g., rural vs. urban) and treatment setting (e.g., community vs. academic medical center) factors. RESULTS: Roughly half said they had never met with a palliative care doctor (49.4%) or nurse (58.4%) as part of cancer care. Only 18% said they knew what palliative care was and could explain it; 17% thought it was the same as hospice. After palliative care was distinguished from hospice, the most frequently cited reasons patients stated they would not seek palliative care were uncertainty about what it would offer (65%), concerns about insurance coverage (63%), difficulty attending multiple appointments (60%), and lack of discussion with an oncologist (59%). The most common reasons patients stated they would seek palliative care were a desire to control pain (62%), oncologist recommendation (58%), and coping support for family and friends (55%). CONCLUSION: Interventions should address knowledge and misconceptions, assess care needs, and facilitate communication between patients and oncologists about palliative care.

Emotional distress predicts palliative cancer care attitudes: The unique role of anger.

OBJECTIVE: Although palliative care can mitigate emotional distress, distressed patients may be less likely to engage in timely palliative care. This study aims to investigate the role of emotional distress in palliative care avoidance by examining the associations of anger, anxiety, and depression with palliative care attitudes. METHODS: Patients (N = 454) with heterogeneous cancer diagnoses completed an online survey on emotional distress and palliative care attitudes. Emotional distress was measured using the Patient-Reported Outcomes Measurement Information System anger, anxiety, and depression scales. The Palliative Care Attitudes Scale was used to measure palliative care attitudes. Regression models tested the impact of a composite emotional distress score calculated from all three symptom measures, as well as individual anger, anxiety, and depression scores, on palliative care attitudes. All models controlled for relevant demographic and clinical covariates. RESULTS: Regression results revealed that patients who were more emotionally distressed had less favorable attitudes toward palliative care (p < 0.001). In particular, patients who were angrier had less favorable attitudes toward palliative care (p = 0.013) while accounting for depression, anxiety, and covariates. Across analyses, women had more favorable attitudes toward palliative care than men, especially with regard to beliefs about palliative care effectiveness. CONCLUSIONS: Anger is a key element of emotional distress and may lead patients to be more reluctant toward timely utilization of palliative care. Although psycho-oncology studies routinely assess depression or anxiety, more attention to anger is warranted. More research is needed on how best to address anger and increase timely utilization of palliative cancer care.

Top Ten Tips Palliative Care Clinicians Should Know About Behavioral Pain Management for Persistent Pain.

Seriously ill patients often experience persistent pain. As a part of a comprehensive repertoire of pain interventions, palliative care clinicians can help by using behavioral pain management. Behavioral pain management refers to evidence-based psychosocial interventions to reduce pain intensity and enhance functional outcomes and quality of life. Conceptualized using the biopsychosocial model, techniques involve promoting helpful behaviors (e.g., activity pacing, stretching, and relaxation exercises) and modifying underlying patterns of thinking, feeling, and communicating that can exacerbate pain. The authors have expertise in pain management, clinical health psychology, geropsychology, behavioral science, and palliative medicine. The article reviews the current evidence for behavioral interventions for persistent pain and provides 10 recommendations for behavioral pain management.

The TRIBE model: How socioemotional processes fuel end-of-life treatment in the United States.

Prior interventions have repeatedly failed to decrease the prescription and receipt of treatments and procedures that confer more harm than benefit at the End-of-Life (EoL); new approaches to intervention are needed. Ideally, future interventions would be informed by a social-ecological conceptual model that explains EoL healthcare utilization patterns, but current models ignore two facts: (1) healthcare is an inherently social activity, involving clinical teams and patients' social networks, and (2) emotions influence social activity. To address these omissions, we scaffolded Terror Management Theory and Socioemotional Selectivity Theory to create the Transtheoretical Model of Irrational Biomedical Exuberance (TRIBE). Based on Terror Management Theory, TRIBE suggests that the prospect of patient death motivates healthcare teams to conform to a biomedical norm of care, even when clinicians believe that biomedical interventions will likely be unhelpful. Based on Socioemotional Selectivity Theory, TRIBE suggests that the prospect of dwindling time motivates families to prioritize emotional goals, and leads patients to consent to disease-directed treatments they know will likely be unhelpful, as moral emotions motivate deference to the perceived emotional needs of their loved ones. TRIBE is unique among models of healthcare utilization in its acknowledgement that moral emotions and processes (e.g., shame, compassion, regret-avoidance) influence healthcare delivery, patients' interactions with family members, and patients' outcomes. TRIBE is especially relevant to potentially harmful EoL care in the United States, and it also offers insights into the epidemics of overtreatment in healthcare settings worldwide. By outlining the role of socioemotional processes in the care of persons with serious conditions, TRIBE underscores the critical need for psychological innovation in interventions, health policy and research on healthcare utilization.

Palliative Care TikTok: Describing the Landscape and Explaining Social Media Engagement.

Background: Although palliative care programs are beneficial to patients and families, most of the public is unfamiliar with and underutilizes palliative services. TikTok, a fast-growing social media platform worldwide, allows users to share short live-recorded videos and could be used to educate the public about palliative care. Objective: This study characterized palliative care TikTok videos and determined characteristics associated with higher user engagement metrics (views, likes, comments, and shares). Methods: The investigators analyzed the content and engagement metrics of palliative care TikTok videos. Each video was coded for author type (health care professional, patient, caregiver, or other) and demographics, features, and themes. Negative binomial regression analyses identified whether author type and themes were associated with engagement statistics. Results: After screening 510 videos, 146 met criteria for analysis. The most prominent author types were health care professionals (55.5%), followed by patients (32.9%) and caregivers (7.5%). Authors were often female (71.2%) and played music (59.5%) while talking (45.9%). Themes were describing personal experiences (47.3%), educating (39.7%), addressing misconceptions (16.4%), responding to questions and comments (14.4%), and raising awareness (11.0%). Caregivers' videos were most likely to be viewed (p = 0.003) and liked (p < 0.001), whereas health care professionals' videos were most frequently shared (p = 0.01). Engagement was highest among videos describing personal experiences (views: p < 0.001, likes: p = 0.002, shares: p = 0.003) and educating (views: p = 0.005, likes: p = 0.002, comments: p = 0.02, shares: p < 0.001). Conclusion: TikTok provides an interactive platform for patients, professionals, and caregivers to share information and experiences about palliative care, making it potentially valuable for explaining palliative care to the public.

Application of Terror Management Theory to End-Of-Life Care Decision-Making: A Narrative Literature Review.

Patients with serious illnesses often do not engage in discussions about end-of-life care decision-making, or do so reluctantly. These discussions can be useful in facilitating advance care planning and connecting patients to services such as palliative care that improve quality of life. Terror Management Theory, a social psychology theory stating that humans are motivated to resolve the discomfort surrounding their inevitable death, has been discussed in the psychology literature as an underlying basis of human decision-making and behavior. This paper explores how Terror Management Theory could be extended to seriously ill populations and applied to their healthcare decision-making processes and quality of care received.

Patient, caregiver, and oncologist predictions of quality of life in advanced cancer: Accuracy and associations with end-of-life care and caregiver bereavement.

BACKGROUND: Informed treatment decision-making necessitates accurate prognostication, including predictions about quality of life. AIMS: We examined whether oncologists, patients with advanced cancer, and caregivers accurately predict patients' future quality of life and whether these predictions are prospectively associated with end-of-life care and bereavement. MATERIALS & METHODS: We conducted secondary analyses of clinical trial data. Patients with advanced cancer (n = 156), caregivers (n = 156), and oncologists (n = 38) predicted patient quality of life 3 months into the future. Patients subsequently rated their quality of life 3 months later. Medical record data documented chemotherapy and emergency department (ED)/inpatient visits in the 30 days before death (n = 79 decedents). Caregivers self-reported on depression, anxiety, grief, purpose, and regret 7-months post-mortem. In mixed-effects models, patient, caregiver, and oncologist quality-of-life predictions at study entry were used to predict end-of-life care and caregiver outcomes, controlling for patients' quality of life at 3-month follow-up, demographic and clinical characteristics, and nesting within oncologists. RESULTS: Caregivers (P < 0.0001) and oncologists (P = 0.001) predicted lower quality of life than what patients actually experienced. Among decedents, 24.0% received chemotherapy and 54.5% had an ED/inpatient visit. When caregivers' predictions were more negative, patients were less likely to receive chemotherapy (P = 0.028) or have an ED/inpatient visit (P = 0.033), and caregivers reported worse depression (P = 0.002), anxiety (P = 0.019), and grief (P = 0.028) and less purpose in life (P < 0.001) 7-months post-mortem. CONCLUSION: When caregivers have more negative expectations about patients' quality of life, patients receive less intensive end-of-life care, and caregivers report worse bereavement outcomes.

Shame in Response to Affective Expression and Its Relation to Social Anhedonia and Schizotypy Traits.

ABSTRACT: Schizotypy is marked by negative symptoms including blunted affect, social isolation, and social anhedonia. Contemporary personality theory suggests that maladaptive shame regulation may disrupt interpersonal function across personality disorders. We hypothesized that "affect shame"-a conditioned response of shame evoked by openly expressing emotions would co-occur with interpersonal deficits in schizotypy. As hypothesized, affect shame was associated with interpersonal deficits (r = 0.17, p < 0.001), physical anhedonia (r = 0.13, p = 0.001), and social anhedonia (r = 0.17, p = 0.001). The observed findings were upheld in analyses controlling for demographic characteristics, depression symptom severity, and neuroticism and were maintained consistently across sensitivity analyses. Findings suggest that shame related to emotional expression is related to interpersonal deficits in schizotypy and have implications for our understanding of the etiology and treatment of this disorder.

Priming the Palliative Psychology Pipeline: Development and Evaluation of an Undergraduate Clinical Research Training Program.

Psychology adds value to palliative care research and practice, but palliative psychology training programs are underdeveloped, particularly prior to advanced graduate and post-doctoral training. The investigation aimed to examine the feasibility of developing an undergraduate clinical research training program focused on the application of palliative psychology to cancer care. Analyses described and examined predictors of trainee performance and post-graduate outcomes. Retrospective analyses of administrative data tracking trainee characteristics (degree programs and tracks, qualifications, and demographics), research trainee performance (satisfactory participation, training duration, scientific output, supervisor ratings, and overall performance), and post-graduate degree programs. The population included all undergraduate trainees in a cancer-focused palliative psychology research lab from inception in 2013 through 2020 at a US research-intensive university. Trainees (N = 25) typically majored in psychology (72.0%) or neuroscience (28.0%), often with second majors. The average participation in the lab was 3.4 semesters. Overall, 92.0% of trainees earned a conference abstract, 56.0% earned a publication, and 72.0% went on to a post-graduate degree program, most commonly psychology PhD, MD, or nursing programs. Trainees enrolling in psychology PhD programs were more likely than other trainees to have been on the pre-psychology PhD track (P < .001) and had higher overall research performance (P = .029), including higher supervisor ratings (P = .008) and higher scientific output (P = .019). This demonstration study provides evidence for the feasibility and beneficial impact of an undergraduate palliative psychology clinical research training program as an early component of cancer educational training. Findings support calls for the development and evaluation of novel palliative training programs worldwide.

Fear of Palliative Care: Roles of Age and Depression Severity.

Background: Palliative care is underutilized due in part to fear and misunderstanding, and depression might explain variation in fear of palliative care. Objective: Informed by the socioemotional selectivity theory, we hypothesized that older adults with cancer would be less depressed than younger adults, and subsequently less fearful of utilizing palliative care. Setting/Subjects: Patients predominately located in the United States with heterogeneous cancer diagnoses (n = 1095) completed the Patient-Reported Outcomes Information System (PROMIS) Depression scale and rated their fear of palliative care using the Palliative Care Attitudes Scale (PCAS). We examined the hypothesized intercorrelations, followed by a bootstrapped analysis of indirect effects in the PROCESS macro for SPSS. Results: Participants ranged from 26 to 93 years old (mean [M] = 60.40, standard deviation = 11.45). The most common diagnoses were prostate (34.1%), breast (23.3%), colorectal (17.5%), skin (15.3%), and lung (13.5%) cancer. As hypothesized, older participants had lower depression severity (r = -0.20, p < 0.001) and were less fearful of palliative care (r = -0.11, p < 0.001). Participants who were more depressed were more fearful of palliative care (r = 0.21, p < 0.001). An indirect effect (ß = -0.04, standard error = .01, 95% confidence interval: -0.06 to -0.02) suggested that depression severity may account for up to 40% of age-associated differences in fear of palliative care. Conclusions: Findings indicate that older adults with cancer are more likely to favor palliative care, with depression symptom severity accounting for age-related differences. Targeted interventions among younger patients with depressive symptoms may be helpful to reduce fear and misunderstanding and increase utilization of palliative care.

Dispositional intelligence of the Five-Factor Model as a learning outcome in an undergraduate personality course.

This pedagogical prime aimed to examine whether undergraduate education in personality psychology was associated with increases in dispositional intelligence, a key variable underlying social skills. The sample consisted of students enrolled in a small Introduction to Personality college course who completed a summative performance-based assessment of their conceptual reasoning that required a complex application of their understanding of personality. On the first day of class, the students completed a dispositional intelligence scale, demonstrating their pre-course understanding of how personal adjectives (e.g., insecure) correspond to particular personality dispositions (e.g., neuroticism). They took the same scale again on the last day of class to assess if learning about the Five-Factor Model (FFM) during the class was associated with increased dispositional intelligence scores. Results from this longitudinal study revealed that participants had an increase in dispositional intelligence from the first to last day of class (d = 0.89, p = .001), especially when perceiving the dispositions of openness (d=.59, p=.04) and agreeableness (d=.69, p=.019). In conclusion, a college personality course emphasizing the Five-Factor Model was associated with increases in a measure of personality understanding.