The American journal of hospice & palliative care最新文献

ObjectiveTraumatic stress among families of critically ill patients is common and associated with interpersonal conflict between families and intensive care unit (ICU) clinicians. This qualitative study aimed to characterize clinician documentation of family members with high levels of traumatic stress in the electronic health record (EHR).MethodsMechanically ventilated patients with surrogate decision makers reporting a Post-Traumatic Stress Symptoms Scale score >35 (consistent with post-traumatic stress disorder) were included. All electronic notes from patients' ICU stays were included. Thematic analysis used a structured codebook focused on surrogate behaviors, relationships, and coping strategies; resources provided to surrogates; and medical decision making.ResultsTwenty-five surrogates were largely female (n = 22, 88.0%) and had a median age of 48 years (interquartile range [IQR] 41-55 years) and median PTSS-10 score of 46 (IQR 38-53). Most of their critically ill loved ones (n = 17, 68%) survived the hospitalization. Three major themes emerged: (1) documentation of surrogate traumatic stress was inconsistent unless it disrupted clinical care; (2) surrogate-clinician conflict and goal misalignment intensified surrogate distress; and (3) multidisciplinary team members were crucial for providing emotional support and bridging communication.ConclusionThese findings suggest the need for standardized approaches to identify and address surrogate traumatic stress in the ICU. Investment in multidisciplinary teams is also essential-not only to ease surrogate distress but also to facilitate trust, communication, and collaborative decision-making. Investing in these resources and bringing awareness to how our documentation can perpetuate stigma are key steps toward reducing re-traumatization and advancing person-centered care in the ICU.

AimsTo explore whether intention, knowledge, contemplation, self-efficacy, and readiness related to advance care planning change over time following advance care planning education, and to examine how sociodemographic factors help predict engagement in advance care planning among community-dwelling adults.DesignA quasi-experimental, one group, pre-test, post-test study was conducted with 78 community-dwelling adults in the United States between November 2024 and March 2025.MethodsThe validated Advance Care Planning Engagement Survey measured intention, knowledge, contemplation, self-efficacy, and readiness at baseline, 2-weeks, and 3-months following use of The Conversation Project Starter Guide. Sociodemographic predictors included age, race, gender, marital status, education, employment, insurance, chronic illness, and zip code. Data were analyzed using descriptive statistics, repeated measures ANOVA, chi-square, and binary logistic regression.ResultsAdvance care planning education positively influenced both the intention to engage (commitment to making a change soon) and readiness to engage in advance care planning among community-dwelling adults. The Conversation Project Starter Guide had a significant impact on intention to engage scores over time, with the most dramatic change observed between baseline and 2-weeks post-education. Chronic illness was a significant predictor of advance care planning engagement among community-dwelling adults.ConclusionFindings suggest that implementing advance care planning education may positively enhance engagement in awareness and readiness to engage in advance care planning.

BackgroundMost older adults in the U.S. visit the emergency department (ED) in their final 6 months of life, providing an opportunity to engage patients in advance care planning (ACP) conversations (ie, a process to formulate and communicate preferences for end-of-life care). While many report ACP engagement, the link between self-reported engagement and pre-existing ACP documentation in the ED, where ACP documentation is especially critical, remains unclear.MethodsThis cross-sectional study is a secondary analysis of the VIDEO-ED trial, a multi-site randomized controlled study evaluating a video-supported ACP intervention in the ED. Patients aged ≥65 years and adults with serious illness (ie, illnesses with a 1-year prognosis) were prospectively enrolled. ACP engagement was measured using the validated ACP Engagement Survey. Medical records were reviewed for ACP documentation, including clinician-documented ACP and advance directives.ResultsAmong 570 participants (median age: 73.0 years, IQR: 68.0-79.0), higher ACP engagement scores were associated with greater clinician-documented ACP (OR: 1.47, 95% CI: 1.09-1.98, P = 0.01) and advance directives (OR: 1.40, 95% CI: 1.15-1.71, P < 0.01). Readiness to sign official documents naming a medical decision-maker was particularly predictive of ACP documentation (OR: 1.42, 95% CI: 1.03-1.97, P = 0.03).ConclusionsOn ED presentation, patient-reported ACP engagement correlated with the presence of pre-existing ACP documentation in the EHR. The ACP Engagement Survey may help identify older adults less likely to have documented ACP, guiding targeted interventions in the ED.

This study aims to determine whether the timing of a VitalTalk communication workshop during the academic year affects internal medicine residents' confidence and stress in serious illness conversations (SICs), and to assess differences by postgraduate year (PGY). It is a single-center, community hospital, retrospective pre-/post-test survey design. Thirty-six medicine residents (PGY1-3+) participated in mandatory half-day VitalTalk workshops delivered in the fall, winter, or spring. Surveys assessed self-perceived confidence and anticipatory stress regarding SICs, breaking bad news, and goals-of-care discussions using 11-point Likert scales. Paired sample t-tests compared pre- and post-workshop responses; one-way ANOVA compared gain scores across PGY levels and cohorts. Across all participants, confidence in SICs increased significantly after the workshop (mean change +1.21, P < 0.01), with improvements observed across all PGY levels and cohorts. No significant differences in confidence gains were detected between groups. Anticipatory stress did not change significantly overall; however, PGY2 residents experienced a significant reduction in stress for both goals-of-care (mean change -1.27, P = 0.015) and breaking bad news (mean change -1.45, P = 0.007). We conclude that the timing of a communication workshop within the academic year was not associated with changes in confidence or stress among all residents. Among graduate years, PGY2 residents showed the most significant stress reduction. These findings suggest there is no association between confidence, stress, and the timing of a SIC VitalTalk workshop during the academic year. PGY2 residents reported the greatest stress reduction from this workshop, suggesting that this year may be the optimal time to introduce a novel communication curriculum.

BackgroundAlthough previous research has highlighted the protective effect of social support in caregiving contexts, further investigation is needed to understand its complex roles in modifying and explaining the impact of caregiver stressors. This cross-sectional study assessed family caregivers' social support, digital literacy, and caregiving-related stressors, examining their relationships and impact on mental health outcomes (anxiety and depressive symptoms). Specifically, we investigated (1) whether digital literacy interacted with stressors to influence caregivers' perceived social support and (2) whether social support mediates the relationship between caregiver stressors and mental health.MethodsData were collected from 308 caregivers of people living with dementia receiving hospice care using structured assessments, including validated measures of social support, digital literacy, anxiety, depressive symptoms, and key sociodemographic characteristics.ResultsThe direct and total effects of caregiver stressors on mental health outcomes were statistically significant, whereas the indirect effects mediated by social support were not. Although tangible support was individually associated with both outcomes, the overall mediating effect of social support was not accounted for by either emotional/informational or tangible support alone. The moderating effect of digital literacy was also not statistically significant.ConclusionsThe association between caregiver stressors and mental health appears to be more directly driven than mediated by social support. The absence of significant indirect or moderating effects highlights the complexity of these relationships and underscores the need for future research to explore additional pathways, contextual influences, and conditions under which aspects of social support or digital literacy may exert greater impact.

Black/African American women with breast and gynecologic cancers face stark end-of-life (EOL) inequities rooted in structural racism, gendered oppression, and financial toxicity. Despite abundant evidence of outcome gaps, theory-driven guidance for equitable, culturally responsive EOL care is limited. This narrative review argues for integrating Critical Race Theory (CRT) and Critical Feminist Theory (CFT) into EOL care frameworks to address the cultural and financial needs of Black/African American women. Drawing on interdisciplinary literature from healthcare, philosophy, sociology, and economics, we examined systemic barriers at the end of life, critiqued current care models, and illustrated how CRT and CFT provide transformative frameworks for clinical practices, research, and policy reform. We summarize philosophical views of death and dying and cultural perspectives on grief and end-of-life practices, then analyze disparities in death, dying, and EOL care especially financial inequities and roles of structural racism and gender-based oppression. Finally, we presented how CRT and CFT illuminate the complex interplay of race, gender, and socioeconomic status and inform structural transformation. Embedding CRT and CFT in healthcare systems is essential to advancing inclusive, justice-oriented EOL care models that reflect lived realities and promote dignity, equity, and culturally attuned support.

ObjectivesThis study aims to evaluate the feasibility and acceptability of an online coach-guided yogic breathing exercise (YBE) program on improving quality of life (QoL) in persons with amyotrophic lateral sclerosis (PwALS).MethodsA waitlist pilot randomized controlled trial with a post-program individual qualitative interview was employed. Thirteen adults with ALS participated in the YBE program, with 7 in the YBE group and 6 in the waitlist group. The program consisted of twelve 30-min online YBE sessions in which each participant received one-on-one coaching from a certified yoga therapist over six consecutive weeks. ALS Specific Quality of Life-Revised (ALSSQOL-R) was the outcome measure.ResultsAll but 2 participants in the YBE training group completed the 12 sessions, with an overall attendance rate of >97%. Compared to the waitlist group using the Mann-Whitney U test, the YBE group showed significant improvement in the change scores of the physical symptoms and intimacy domains of the ALSQOL-R at post-test. No significant differences in the change scores between the YBE and waitlist groups in the total score and other domains of the ALSQOL-R were observed. Thematic analysis of participants' interview about their experiences with the program revealed two themes: sense of control over breathing and emotional regulation through relaxation.ConclusionDespite the small sample size, the high attendance rate and positive feedback indicate that the YBE program is feasible and acceptable to PwALS. The YBE program demonstrated significant QoL benefits for PwALS. Participants reported enhanced control over their breathing and better emotional regulation.

ObjectivesExistential concerns are inherent in serious illness and at the end of life, yet communication to address such concerns can be challenging. This study explored multidisciplinary oncology clinicians' experiences navigating existential communication with patients and families, as well as what makes existential communication meaningful and challenging.MethodsThis qualitative study analyzed responses to open-ended survey questions collected from N = 83 participants (multidisciplinary oncology clinicians, including nurses, social workers, and chaplains) who participated in a communication training course. Data were analyzed using thematic analysis.ResultsThemes across clinicians' experiences of existential communication with patients and families included existential questions; guilt/regret; fears about the future; grief; preparing for death; values and goals of care; spiritual concerns; and letting go. Meaningful experiences included bearing witness; providing emotional support and information; easing suffering; learning and growing; and the honor of accompanying patients and families through the end of life. Challenges included discomfort when talking about death; facing denial; being unable to "fix it"; resistance to palliative care among oncology team members, patients, and families; fear of saying the wrong thing; navigating conflicting values; responding to spiritual concerns; barriers to inclusive, high-quality care; and struggling with emotions.ConclusionsExistential communication is a vital yet challenging part of oncology care. Clinicians find deep meaning in this work but face emotional and systemic barriers. Findings highlight the need for training, reflection, and institutional support to help clinicians engage in existential communication with patients and families near the end of life.

BackgroundPalliative care (PC) has the potential to alleviate symptom burden and enhance quality of life, yet use of PC among American Indians lags significantly behind whites.MethodsThis randomized clinical trial employed a randomized, complete block, posttest-only control group design to evaluate the efficacy of a culture-centric narrative video message to increase knowledge of and communication about PC among AI adults residing in three Great Plains Reservations compared to a general PC message or no message. Measures included participants' knowledge of and intentions to discuss PC using a posttest survey.ResultsN = 320 individuals completed the survey. Both the culture-centric and general messages demonstrated statistically significant results for increasing participants' PC knowledge compared to the no message group. The culture-centric message participants had greater odds of feeling the emotions and agreeing with the characters compared to the general message; however, there were no differences noted in intentions to discuss PC.ConclusionsThis study demonstrates the importance of messaging to improve PC knowledge and reduce misperceptions among populations with a history of mistrust of healthcare institutions. Embedding the culture's values and ways of understanding serious illness care can serve to break down barriers in PC acceptance and provide opportunities for improving quality of life for AIs with serious illness.

Introduction: Measuring palliative care needs of patients with multiple complex illnesses and their family, is essential for providing quality clinical care. The integrated palliative care outcome scale (IPOS) is a scientifically verified measure of patients' physical, emotional symptoms, and their palliative care communication and practical needs. The patients in this study require palliative care due to both their end-of-life heart failure (HF) and vascular dementia. Purpose: The purposes are to describe and compare home palliative care needs measured by the family caregivers (N = 20) and patients (N = 20) IPOS scores and to examine whether the patient IPOS total score can predict patient HF health status and caregiving burden scores. Methods: This study uses explanatory research design with rigorous methods for obtaining information from multiple sources. Descriptive, Cohen's Kappa (k) statistics comparing patient and caregiver IPOS scores and regression analyses to examine the patient IPOS scores impact on patient HF health status and caregiving burden scores were used. Results: There was significant agreement between patient and caregiver ratings on 16 out of 17 IPOS items (k = .34 to .80). Regression analyses found that the patient IPOS total score significantly predicted patients' HF health status (β = -.50, P < .05), and caregiving burden scores (β = .57, P < .01). Conclusion: Patients' and their caregivers' IPOS scores agreement indicates palliative care needs can be consistently identified. The patient IPOS total scores can predict patients' HF health status and caregiving burden. These measures provide information directly applicable for health professionals guiding palliative home care.