Clinician perspectives on delivering primary and specialty palliative care in community oncology practices.

PURPOSE: Clinical guidelines recommend early palliative care for patients with advanced lung cancer. In rural and underserved community oncology practices with limited resources, both primary palliative care from an oncologist and specialty palliative care are needed to address patients' palliative care needs. The aim of this study is to describe community oncology clinicians' primary palliative care practices and perspectives on integrating specialty palliative care into routine advanced lung cancer treatment in rural and underserved communities. METHODS: Participants were clinicians recruited from 15 predominantly rural community oncology practices in Kentucky. Participants completed a one-time survey regarding their primary palliative care practices and knowledge, barriers, and facilitators to integrating specialty palliative care into advanced-stage lung cancer treatment. RESULTS: Forty-seven clinicians (30% oncologists) participated. The majority (72.3%) of clinicians worked in a rural county. Over 70% reported routinely asking patients about symptom and physical function concerns, whereas less than half reported routinely asking about key prognostic concerns. Roughly 30% held at least one palliative care misconception (e.g., palliative care is for only those who are stopping cancer treatment). Clinician-reported barriers to specialty palliative care referrals included fear a referral would send the wrong message to patients (77%) and concern about burdening patients with appointments (53%). Notably, the most common clinician-reported facilitator was a patient asking for a referral (93.6%). CONCLUSION: Educational programs and outreach efforts are needed to inform community oncology clinicians about palliative care, empower patients to request referrals, and facilitate patients' palliative care needs assessment, documentation, and standardized referral templates.

Financial burden and physical and emotional quality of life in COPD, heart failure, and kidney failure.

Patients with chronic and serious illnesses experience significant quality of life concerns. More research is needed to understand the impact of financial burden on patients with COPD, heart failure, and kidney failure. Patients with COPD, heart failure, or kidney failure completed a cross-sectional online survey using validated measures of financial burden (general financial strain as well as financial toxicity attributable to treatment), physical quality of life (symptom burden and perceived health), and emotional quality of life (anxiety, depression, and suicidal ideation). ANCOVA was used to examine whether financial strain and financial toxicity were associated with physical and emotional quality of life, while accounting for key covariates. Among 225 participants with COPD (n = 137), heart failure (n = 48), or kidney failure (n = 40), 62.2% reported general financial strain, with 34.7% experiencing financial toxicity attributable to treatments. Additionally, 68.9% rated their health as fair or poor, experiencing significant symptom burden including fatigue, dyspnea, and chest pain. Participants also reported clinically relevant levels of anxiety (55.1%), depression (52.0%), and suicidal ideation (21.8%). In the total sample, financial strain was associated with worse physical and emotional quality of life on all measures (all Ps < .001). Financial toxicity attributable to treatment was not associated with quality of life in the total sample or subsamples. Patients with COPD, heart failure, and kidney failure face significant financial, physical, and emotional burdens. Financial strain appears to undermine physical and emotional quality of life. Our study highlights the demand for interventions aimed at mitigating financial strain and toxicity experienced by individuals with chronic illnesses.

Masking Policies at National Cancer Institute-Designated Cancer Centers During Winter 2023 to 2024 COVID-19 Surge.

This cross-sectional study examines variation in masking policies at National Cancer Institute (NCI)­designated cancer centers during the winter 2023-2024 COVID-19 surge.

Understanding Intensive Care Unit Family Caregivers' Vulnerability to Post-Traumatic Stress Disorder: The Impact of Neurotic Personality Traits, Emotional Suppression, and Perceptions of Unexpected Death.

Rationale: Family members of patients who die in an intensive care unit (ICU) are at heightened risk of post-traumatic stress disorder (PTSD) symptoms. Not all surrogates develop these symptoms and heterogeneity exists in PTSD symptom clusters. Objectives: The study tested a personality model of PTSD symptoms in bereaved family caregivers of ICU patients. It was hypothesized that family members endorsing higher levels of neurotic personality traits would report higher levels of PTSD symptom clusters and that these associations would be explained by tendencies to view the patient's death as unexpected and to cope by suppressing their emotions. Methods: Participants were family members of ICU patients at an urban, academic medical center who either died or were discharged to an inpatient hospice unit. Participants were contacted for participation at least six months after the patient's death. Participants completed measures of personality, emotion regulation, and PTSD symptoms. Data were analyzed using path analysis. Results: Approximately one-third (35%) of the sample of 162 caregivers endorsed at-risk levels of PTSD. Individuals reporting higher levels of neurotic personality traits reported more PTSD symptoms (r = 0.53, p < 0.001). Perceptions that the patient death was unexpected partially explained the association of neuroticism with the intrusive re-experiencing PTSD symptoms (B = 0.45, p = 0.031). In contrast, emotional suppression partially explained the association of neuroticism with avoidance (B = 0.70, p = 0.010) and hyperarousal symptom clusters (B = 0.37, p = 0.041). Conclusions: Family vulnerability to PTSD after an ICU death can be conceptualized based on neurotic personality traits. Tendencies to view the patient's death as unexpected may contribute to intrusive thoughts and memories of the ICU experience. Individuals may avoid reminders and remain at heightened levels of arousal when they suppress their emotional experiences. Key Message: Family members who experience the death of a loved one following ICU treatment are vulnerable to PTSD symptoms. These reactions to ICU-related losses may be shaped by family members' personalities, expectations, and emotion regulation styles. Understanding these characteristics could inform family screening and intervention efforts in the ICU.

Personality and Self-efficacy for Illness Management in Cancer.

Objectives: Self-efficacy for illness management is increasingly recognized as important for outcomes in cancer. We examined whether The Big Five personality dimensions were associated with self-efficacy for illness management and hypothesized that patients who were less neurotic and more conscientious would have better self-efficacy. Methods: Adults with cancer completed a cross-sectional survey that included the Mini-International Personality Item Pool (IPIP) and three subscales of the Patient-Reported Outcomes Measurement Information System (PROMIS) Self-Efficacy for Chronic Conditions: managing emotions, managing symptoms, and managing treatment and medication. Linear regressions were used to test the hypotheses, while controlling for covariates. Results: The personality and PROMIS self-efficacy measures demonstrated good evidence of reliability (median Cronbach's alpha = .78, range of .69-.92) and validity (intercorrelations). As hypothesized, patients who were less neurotic or more conscientious had higher levels of illness self-efficacy overall and on each of the three subscales (all ps < .001). Openness was associated with better self-management of symptoms (p = .013) and emotions (p = .040). Extraversion was associated with better self-management of emotions (p = .024). Conclusions: Personality plays a vital role in illness self-efficacy for patients with cancer. Practice Implications: As a part of multidisciplinary care teams, psychosocial experts can use these findings to help patients better manage their illness.

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.

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.

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.

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.

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.

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.

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.