Medical Students’ Views and Ideas About Palliative Care Communicatio Training

This study focused on the undergraduate medical student to identify views and ideas held toward palliative care communication training, pedagogical approaches to this training, and its perceived effectiveness and use in the medical field. Two focus groups consisting of fourth-year medical students were conducted, and their responses were analyzed using grounded theory categorization. Results indicated that students: (a) prefer to learn nonverbal communication techniques, (b) believe that natural ability and experience outweigh communication curriculum, (c) view the skill of breaking bad news as largely dependent on knowledge and expertise, and (d) prefer curriculum on palliative care and hospice to consist of information (eg, advance directives) rather than communication skills. Implications for these interpretive themes are discussed as well as future research and practice.Yeshttps://us.sagepub.com/en-us/nam/manuscript-submission-guideline

Plasma Neurofilament Light for Prediction of Disease Progression in Familial Frontotemporal Lobar Degeneration

Objective: We tested the hypothesis that plasma neurofilament light chain (NfL) identifies asymptomatic carriers of familial frontotemporal lobar degeneration (FTLD)-causing mutations at risk of disease progression. Methods: Baseline plasma NfL concentrations were measured with single-molecule array in original (n = 277) and validation (n = 297) cohorts. C9orf72, GRN, and MAPT mutation carriers and noncarriers from the same families were classified by disease severity (asymptomatic, prodromal, and full phenotype) using the CDR Dementia Staging Instrument plus behavior and language domains from the National Alzheimer's Disease Coordinating Center FTLD module (CDR+NACC-FTLD). Linear mixed-effect models related NfL to clinical variables. Results: In both cohorts, baseline NfL was higher in asymptomatic mutation carriers who showed phenoconversion or disease progression compared to nonprogressors (original: 11.4 ± 7 pg/mL vs 6.7 ± 5 pg/mL, p = 0.002; validation: 14.1 ± 12 pg/mL vs 8.7 ± 6 pg/mL, p = 0.035). Plasma NfL discriminated symptomatic from asymptomatic mutation carriers or those with prodromal disease (original cutoff: 13.6 pg/mL, 87.5% sensitivity, 82.7% specificity; validation cutoff: 19.8 pg/mL, 87.4% sensitivity, 84.3% specificity). Higher baseline NfL correlated with worse longitudinal CDR+NACC-FTLD sum of boxes scores, neuropsychological function, and atrophy, regardless of genotype or disease severity, including asymptomatic mutation carriers. Conclusions: Plasma NfL identifies asymptomatic carriers of FTLD-causing mutations at short-term risk of disease progression and is a potential tool to select participants for prevention clinical trials. Trial registration information: ClinicalTrials.gov Identifier: NCT02372773 and NCT02365922. Classification of evidence: This study provides Class I evidence that in carriers of FTLD-causing mutations, elevation of plasma NfL predicts short-term risk of clinical progression

MRI data-driven algorithm for the diagnosis of behavioural variant frontotemporal dementia

Introduction: Structural brain imaging is paramount for the diagnosis of behavioural variant of frontotemporal dementia (bvFTD), but it has low sensitivity leading to erroneous or late diagnosis. Methods: A total of 515 subjects from two different bvFTD cohorts (training and independent validation cohorts) were used to perform voxel-wise morphometric analysis to identify regions with significant differences between bvFTD and controls. A random forest classifier was used to individually predict bvFTD from deformation-based morphometry differences in isolation and together with semantic fluency. Tenfold cross validation was used to assess the performance of the classifier within the training cohort. A second held-out cohort of genetically confirmed bvFTD cases was used for additional validation. Results: Average 10-fold cross-validation accuracy was 89% (82% sensitivity, 93% specificity) using only MRI and 94% (89% sensitivity, 98% specificity) with the addition of semantic fluency. In the separate validation cohort of definite bvFTD, accuracy was 88% (81% sensitivity, 92% specificity) with MRI and 91% (79% sensitivity, 96% specificity) with added semantic fluency scores. Conclusion: Our results show that structural MRI and semantic fluency can accurately predict bvFTD at the individual subject level within a completely independent validation cohort coming from a different and independent database

Communication as Comfort

This exceptional work explores the complexities of communication at one of the most critical stages of the life experience--during advanced, serious illness and at the end of life. Challenging the predominantly biomedical model that informs much communication between seriously ill and/or dying patients and their physicians, caregivers, and families, Sandra L. Ragan, Elaine M. Wittenberg-Lyles, Joy Goldsmith, and Sandra Sanchez-Reilly pose palliative care--medical care designed to comfort rather than to cure patients--as an antidote to the experience of most Americans at the most vulnerable juncture of their lives. With an author team comprised of three health communication scholars and one physician certified in geriatrics and palliative medicine, this volume integrates the medical literature on palliative care with that of health communication researchers who advocate a biopsychosocial approach to health care. Applying communication theories and insights to illuminate problems and to explain their complexities, the authors advocate a patient-centered approach to care that recognizes and seeks to lessen patients\u27 suffering and the many types of pain they may experience (physical, psychological, social, and spiritual) during life-threatening illness

Communicating a terminal prognosis in a palliative care setting: Deficiencies in current communication training protocols

The goal of this study was to understand the use and effectiveness of current communication protocols in terminal prognosis disclosures. Data were gathered from an interdisciplinary palliative care consultation service team at a Veterans Hospital in Texas, USA. Medical communication guidelines, a consistent component in United States palliative care education, propose models for delivery of bad news. However, there is little empirical evidence that demonstrates the effectiveness of these guidelines in disclosures of a terminal prognosis. Based on ethnographic observations of terminal prognosis meetings with dying patients, palliative care team meetings, and semi-structured interviews with palliative care team practitioners, this study notes the contradictory conceptualizations of current bad news communication guidelines and highlights that communicating a terminal prognosis also includes (1) adaptive communication based on the patient\u27s acceptability, (2) team based/family communication as opposed to physician-patient dyadic communication, and (3) diffusion of topic through repetition and definition as opposed to singularity of topic. We conclude that environmentally based revision to communication protocol and practice in medical school training is imperative. © 2008 Elsevier Ltd. All rights reserved

Communication as comfort: Multiple voices in palliative care

This exceptional work explores the complexities of communication at one of the most critical stages of the life experience--during advanced, serious illness and at the end of life. Challenging the predominantly biomedical model that informs much communication between seriously ill and/or dying patients and their physicians, caregivers, and families, Sandra L. Ragan, Elaine M. Wittenberg-Lyles, Joy Goldsmith, and Sandra Sanchez-Reilly pose palliative care--medical care designed to comfort rather than to cure patients--as an antidote to the experience of most Americans at the most vulnerable juncture of their lives. With an author team comprised of three health communication scholars and one physician certified in geriatrics and palliative medicine, this volume integrates the medical literature on palliative care with that of health communication researchers who advocate a biopsychosocial approach to health care. Applying communication theories and insights to illuminate problems and to explain their complexities, the authors advocate a patient-centered approach to care that recognizes and seeks to lessen patients\u27 suffering and the many types of pain they may experience (physical, psychological, social, and spiritual) during life-threatening illness

Identificación de recursos de medios sociales disponibles para cuidadores de pacientes

Antecedentes: la esclerosis lateral amiotrófica (ELA) es un trastorno neurodegenerativo progresivo que causa debilidad muscular, discapacidad y muerte, con una supervivencia de 3-5 años y afecta a todas las poblaciones, incluidos los hispanos. Los cuidadores familiares (FCG) atienden principalmente a los pacientes con ELA que experimentan una carga, angustia psicológica y una calidad de vida deteriorada. Por lo tanto, FCG no puede abandonar sus hogares para acceder a los recursos. Las redes sociales pueden ser una forma de acceder al soporte, pero se sabe poco sobre la calidad / cantidad de los recursos de AL-FCG. Objetivos de investigación: Identificar y clasificar los tipos de recursos bilingües disponibles para ALS-FCG en Facebook. Métodos: Utilizamos Facebook tanto grupos (públicos y cerrados) como páginas y recopilamos números de me gusta, tipo de organización y recursos proporcionados. Los términos de búsqueda bilingües (español) incluyeron ALS / ALS-caregiver. Resultados: 24 páginas / 31 grupos en inglés vs. 37 páginas / 29 grupos en español. Los recursos en inglés tuvieron más me gusta / miembros (3510/790 vs.410 / 95; p <0.001) y estuvieron más activos (más de 60 publicaciones en el último mes). Los recursos comunitarios y la provisión de apoyo social se compartieron de manera similar a través de grupos en ambos idiomas; la promoción fue más prominente entre los grupos españoles (69% vs.39%, p <0.001). Las páginas en inglés proporcionaron significativamente más apoyo social (96% vs.65%, p <0.001), más habilidades de cuidador (67% vs.49%, p <0.001), roles inspiradores (88% vs.59%, p <0.001) . Las páginas y grupos en español fueron mejores en proporcionar noticias / investigación a FCG (59% vs.16%, p <0.001). Implicaciones para la investigación, política o práctica: Facebook proporciona numerosos recursos bilingües útiles para ALS-FCG. FCG puede recibir apoyo social, inspiración, capacitación, noticias / investigación y defensa.Background: Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disorder that causes muscle weakness, disability, and death, with survival of 3-5 years and affecting all populations including Hispanics. ALS patients are mostly cared for by family caregivers (FCG) who experience burden, psychological distress and impaired quality-of-life. Thus, FCG may not leave their homes to access resources. Social media might be a way to accessing support, but little is known about quality/quantity of AL- FCG resources. Research Objectives: To identify and categorize types of bilingual resources available to ALS-FCG in Facebook. Methods: We used Facebook both groups (public and closed groups) and pages and collected numbers-of-likes, organization type and resource provided. Bilingual search terms (Spanish) included ALS/ALS-caregiver. Results: 24 pages/31 groups in English vs. 37 pages/29 groups in Spanish. English resources had more likes/members (3510/790 vs.410/95; p<0.001) and were more active (60+ posts in recent month). Community resources and provision of social support were similarly shared through groups in both languages; advocacy was more prominent among Spanish groups (69%vs.39%, p<0.001). English pages significantly provided more social support (96% vs.65%, p<0.001), more caregiver skills (67%vs.49%, p<0.001), inspirational roles (88% vs.59%, p<0.001). Spanish pages and groups were better in providing news/research to FCG (59%vs.16%, p<0.001). Implications for research, policy or practice: Facebook provides numerous useful bilingual resources to ALS-FCG. FCG may receive social support, inspiration, training, news/research and advocacy. Further interventions need to actively improve the role of social-media in supporting bilingual ALS FCG and use it as a platform of dissemination

Interdisciplinary geriatric and palliative care team narratives: Collaboration practices and barriers

Despite the development and implementation of team training models in geriatrics and palliative care, little attention has been paid to the nature and process of teamwork. Geriatrics and palliative care in the clinical setting offer an interdisciplinary approach structured to meet the comprehensive needs of a patient and his or her family. Fellowship members of an interdisciplinary geriatric and palliative care team participated in semistructured interviews. Team members represented social work, chaplaincy, psychology, nursing, and medicine. A functional narrative analysis revealed four themes: voice of the lifeworld, caregiver teamwork, alone on a team, and storying disciplinary communication. The content-ordering function of narratives revealed a divergence in team members conceptualization of teamwork and team effectiveness, and group ordering of narratives documented the collaborative nature of teams. The study findings demonstrate the potential for narratives as a pedagogical tool in team training, highlighting the benefits of reflective practice for improving teamwork and sustainability

Palliative care communication curriculum: What can students learn from an unfolding case?

Limited attention to palliative care communication training is offered to medical students. In this work, we pursued unfolding case responses and what they indicated about student tendencies to use palliative care communication as well as what medical students can learn from their own reflective practice about palliative care. Findings showed an overwhelming trend for students to avoid palliative care communication or inclusion of topics including advance directives, place of care, family support, and dying. Instead, students relied heavily on the SPIKES protocol, communication that was strategically vague and ambiguous, and discussions that centered on specialty care and referral. In reflecting on their own case study responses, students noted an absence of direct communication about prognosis, no coordination of care, late hospice entry, and patient pain resulting from communication inefficacies. Future research should focus on the development of formal and adaptive curriculum structures to address these communication needs. © The Author(s) 2011

How we involved bereaved family caregivers in palliative care education

As palliative care coursework continues to proliferate within US medical education, novel curriculum approaches have included the use of cancer survivors and family caregivers. We included bereaved family caregivers in structured clinical teaching. Methods: First year students were exposed to a lecture about death and dying and then met with a bereaved caregiver in small groups of 1015 for a presentation about the caregiving experience, bereavement, and question and answer period. Substantial pre-planning was involved to recruit caregivers and arrange for classroom space. Results: Participation evoked caregiver anxiety but was resolved with adequate arrangement of the classroom and student introductions. Conclusions: Future implementation of bereaved caregivers in palliative coursework should include an appropriate follow-up phone call as well as recruiting more caregivers than necessary for the curriculum. © 2011 Informa UK Ltd