Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease.

Importance: Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation. Objective: To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings. Design, Setting, and Participants: This pragmatic, stepped-wedge comparative effectiveness trial enrolled and observed participants from 19 community neurology practices supported by PC teams at 2 academic centers from March 8, 2017, to December 31, 2020. Participants were eligible if they had PDRD and moderate to high PC needs. A total of 612 persons with PDRD were referred; 253 were excluded. Patients were excluded if they had another diagnosis meriting PC, were receiving PC, or were unable or unwilling to follow study procedures. Patients received usual care or the intervention based on when their community neurologist was randomized to start the intervention. Data were analyzed from January 2021 to September 2023. Intervention: The intervention included (1) PC education for community neurologists and (2) team-based PC support via telehealth. Main Outcomes and Measures: The primary outcomes were differences at 6 months in patient quality of life (QOL; measured by the Quality of Life in Alzheimer Disease Scale [QOL-AD]) and caregiver burden (Zarit Burden Interview) between the intervention and usual care. Results: A total of 359 patients with PDRD (233 men [64.9%]; mean [SD] age, 74.0 [8.8] years) and 300 caregivers were enrolled. At 6 months, compared with usual care, participants receiving the intervention had better QOL (QOL-AD score, 0.09 [95% CI, -0.63 to 0.82] vs -0.88 [95% CI, -1.62 to -0.13]; treatment effect estimate, 0.97; 95% CI, 0.07-1.86; P = .03). No significant difference was observed in caregiver burden (Zarit Burden Interview score, 1.19 [95% CI, 0.16 to 2.23] vs 0.55 [95%, -0.44 to 1.54]; treatment effect estimate, 0.64; 95% CI, -0.62 to 1.90; P = .32). Advance directive completion was higher under the intervention (19 of 38 [50%] vs 6 of 31 [19%] among those without directives at the beginning of the study; P = .008). There were no differences in other outcomes. Conclusions and Relevance: PC education for community neurologists and provision of team-based PC via telehealth is feasible and may improve QOL and advance care planning. Overall treatment effects were small and suggest opportunities to improve both the intervention and implementation. Trial Registration: ClinicalTrials.gov Identifier: NCT03076671.

Refusal of Representation in Advance Care Planning: A Case-Inspired Ethical Analysis.

Unrepresented patients-people without capacity to make medical decisions who also lack a surrogate decision-maker-form a large and vulnerable population within the United States health care system. The burden of unrepresentedness has rightly prompted widespread calls for more and better advance care planning, in which still-healthy patients are encouraged to designate a surrogate decision-maker and thus avoid the risk of becoming unrepresented. However, we observe that some patients, even with available social contacts and access to adequate advance care planning services, simply decline to name a surrogate decision-maker. We propose a novel concept of "informed refusal of representation" ("IRR") to characterize the position held by some such patients, who are often overlooked in prior work on unrepresentedness. We then discuss physicians' ethical obligations in the face of such a refusal and avenues by which physicians can support patients without surrogates in receiving goal-concordant care.

"This Won't Hurt a Bit": Is There a Role for Music in Bedside Procedures?

Music has played a long and storied role in clinical healing. However, the integration of music into clinical practice has been slow to gain traction, despite a recent meta-analysis demonstrating association of music interventions with clinically meaningful improvements in health-related quality of life. There is growing evidence that music has an active role in reducing patient pain and anxiety as well as affecting physiologic parameters, such as heart rate and blood pressure, in an ICU setting. Past studies have shown that incorporation of music into procedures in the operating room, radiology suites, and catheterization labs has reduced concurrent pharmacologic sedation requirements. In the age of patient-centered personalized medicine, we propose a call to action to implement an easily accessible, attainable checklist item offering a personal choice of music for patients during standardized bedside procedural training, to reduce anxiety, pain, and pharmacologic sedation and potentially improve clinical outcomes.

Medical School Clinical Knowledge Exam Scores, Not Demographic or Other Factors, Associated With Residency In-Training Exam Performance.

BACKGROUND: The anesthesiology in-training exam (ITE) is a 200-item multiple-choice assessment completed annually by physician residents. Because all matriculated U.S. Department of Defense (DoD) anesthesiology residents are "hired" by the DoD after residency graduation, it is important to ensure that ITE performance, as a proxy for core competencies achievement, is maximized. METHODS: Graduated resident program files from 2013 to 2020 were queried for age, sex, matriculant status (medical student vs. other), medical school (Uniformed Services University vs. other), military service (Army vs. Air Force), preresidency military service (yes vs. no), U.S. Medical Licensing Exam (USMLE) Step 2 Clinical Knowledge (CK) score, and the American Board of Anesthesiologists ITE Score from the third clinical anesthesia year (CA-3 year). RESULTS: For every 1-point increase in USMLE Step 2 CK true z-score, the CA-3 ITE z-score increased by 0.59 points. Age was not associated with CA-3 ITE z-score in any dataset regression. Categorical covariates of sex, application status, medical school, service, and preresidency military service were not significantly associated with CA-3 ITE z-score (all P >.05), as shown by estimated adjusted marginal means. The estimated adjusted grand mean of CA-3 ITE z-scores was 0.48 (standard error ± 0.14). CONCLUSION: Resident physicians enter residency with varying degrees of past academic success, and it is important to develop early strategies to support them in acquiring the requisite knowledge base.

Implementation of an Un-Pairing Passport to Improve the Transition From Intern to Resident During a Critical Period of Anesthesiology Residency Training.

Background: The transition from intern year to the first year of clinical anesthesiology residency (CA-1) is a challenging period for residents and their supervisors. Orientation methods and instructional material targeting this transition vary across U.S. residency programs. An un-pairing passport was implemented during the 2021-2022 transition to guide and provide expectations for interns, senior residents, and staff. The objective of this quality improvement project was to assess the effectiveness of the passport in improving the transition period and overall preparedness of the new CA-1s. Methods: We surveyed 3 groups (CA-1s, CA-2s/CA-3s, and staff anesthesiologists) 6 months after the completion of passport implementation to retrospectively assess the 2021-2022 CA-1 class's preparedness across 7 domains compared with those who transitioned before passport implementation. Mann-Whitney U statistics and median effect sizes were used to compare pre- and postintervention. Results: Self-reflected preparedness scores of the CA-1s were higher across all domains compared with the senior resident group (r = 0.328-0.548). Overall level of comfort and preparedness for the start of the CA-1 year was higher in the postintervention group (r = 0.162- 0.514). Staff anesthesiologists' perceived preparedness of the residents was also higher across all domains for the postintervention group (r = 0.197-0.387). Conclusion: The un-pairing passport improved residents' and staff anesthesiologists' subjective assessments of the readiness of new CA-1 residents after a critical transition in their training. Similar tools can be more broadly applied to other anesthesiology residency and possibly fellowship programs as well as subspecialty rotations within those programs.

Comprehensive and Equitable Care for Vulnerable Veterans With Integrated Palliative, Psychology, and Oncology Care.

OBJECTIVE: Veterans who live with cancer need comprehensive care. The National Comprehensive Cancer Network and the American College of Surgeons Commission on Cancer guidelines recommend evaluating distress and providing appropriate follow-up to all patients with cancer. METHODS: We created patient-centered, collaborative clinics to screen for and address cancer-related distress. Medical oncologists received education about available supportive services and instructions on how to make referrals. Participants completed the Coleman Supportive Oncology Collaborative screening questions. RESULTS: Patients in this outpatient US Department of Veterans Affairs medical oncology clinic were primarily older, African American men. Most veterans screened positive for ≥ 1 type of cancer-related distress. Patients screened for high levels of distress received in-person clinical follow-up for further evaluation and to make immediate referrals to supportive care services. CONCLUSIONS: We evaluated patients' needs, made referrals as needed, and helped bring care directly into the oncology clinic. Using a screening tool for cancer-related distress and managing distress with integrated psychosocial providers could improve care coordination and enhance patient-centered supportive oncology care, especially for high-risk patients. A full-time social worker was integrated into the medical oncology clinics based on our program's success.

Exploring perception and usage of narrative medicine by physician specialty: a qualitative analysis.

BACKGROUND: Narrative medicine is a well-recognized and respected approach to care. It is now found in medical school curricula and widely implemented in practice. However, there has been no analysis of the perception and usage of narrative medicine across different medical specialties and whether there may be unique recommendations for implementation based upon specialty. The aims of this study were to explore these gaps in research. METHODS: Fifteen senior physicians who specialize in internal medicine, pediatrics, or surgery (5 physicians from each specialty) were interviewed in a semi-structured format about the utilization, benefits, drawbacks (i.e., negative consequences), and roles pertaining to narrative medicine. Qualitative content analysis of each interview was then performed. RESULTS: Three themes emerged from our analysis: roles, practice, and outcomes. Through these themes we examined the importance, utilization, barriers, benefits, and drawbacks of narrative medicine. There was consensus that narrative medicine is an important tool in primary care. Primary care physicians (general internists and general pediatricians) also believed that narrative medicine is not as important for non-primary care providers. However, non-primary care providers (surgeons) generally believed narrative medicine is valuable in their practice as well. Within specialties, providers' choice of language varied when trying to obtain patients' narratives, but choice in when to practice narrative medicine did not differ greatly. Among specialties, there was more variability regarding when to practice narrative medicine and what barriers were present. Primary care physicians primarily described barriers to eliciting a patient's narrative to involve trust and emotional readiness, while surgeons primarily described factors involving logistics and patient data as barriers to obtaining patients' narratives. There was broad agreement among specialties regarding the benefits and drawbacks of narrative medicine. CONCLUSIONS: This study sheds light on the shared and unique beliefs in different specialties about narrative medicine. It prompts important discussion around topics such as the stereotypes physicians may hold about their peers and concerns about time management. These data provide some possible ideas for crafting narrative medicine education specific to specialties as well as future directions of study.

Meaning and purpose in Huntington's disease: a longitudinal study of its impact on quality of life.

OBJECTIVE: Previous work in Huntington's disease (HD) has shown that a sense of meaning and purpose (M&P) is positively associated with positive affect and well-being (PAW); however, it was unknown whether HD-validated patient-reported outcomes (PROs) influence this association and how M&P impacts PROs in the future. Our study was designed to examine if HD-validated PROs moderate the relationship between M&P and PAW and to evaluate if baseline M&P predicts 12- and 24-month changes in HD-validated PROs. METHODS: This was a longitudinal, multicenter study to develop several PROs (e.g., specific for the physical, emotional, cognitive, and social domains) for people with HD (HDQLIFE). The sample consisted of 322 people with HD (n = 50 prodromal, n = 171 early-stage manifest, and n = 101 late-stage manifest HD). A single, multivariate linear mixed-effects model was performed with PAW as the outcome predicted by main effects for M&P and several moderators (i.e., an HD-validated PRO) and interactions between M&P and a given PRO. Linear-mixed models were also used to assess if baseline M&P predicted HD-validated PROs at 12 and 24 months. RESULTS: Higher M&P was positively associated with higher PAW regardless of the magnitude of symptom burden, as represented by HD-validated PROs, and independent of disease stage. In our primary analysis, baseline M&P predicted increased PAW and decreased depression, anxiety, anger, emotional/behavioral disruptions, and cognitive decline at 12 and 24 months across all disease stages. INTERPRETATION: These findings parallel those seen in the oncology population and have implications for adapting and developing psychotherapeutic and palliative HD interventions.

Patient Perspectives on Religiously Affiliated Care in Rural and Urban Colorado.

INTRODUCTION: Religiously affiliated healthcare organizations play an important role in the delivery of care in the United States. There is a gap in the literature regarding patients' attitudes toward receiving care at these institutions, especially in geographically diverse populations. METHODS: In this two-site pilot study, we conducted a written survey of 141 adult primary care patients at non-religiously affiliated clinics in rural and urban Colorado. Demographic information, measures of religiosity and spirituality, and opinions regarding religiously affiliated care were collected. RESULTS: 73.3% and 69.6% of patients in rural and urban counties, respectively, had no preference as to the religious affiliation of their care. However, patients in the urban county (24.1%) were more likely than those in the rural county (8.3%) to prefer care that was not affiliated with any religion. CONCLUSIONS: This study suggests that concerns such as proximity to care and patient/provider relationships may be more important to patients than the possible religious affiliation of a healthcare organization. This work is a first step in better understanding patients' attitudes toward religiously affiliated care in urban versus rural settings.

Patient desire for spiritual assessment is unmet in urban and rural primary care settings.

BACKGROUND: Incorporation of patient religious and spiritual beliefs in medical care has been shown to improve the efficacy of medical interventions and health outcomes. While previous study has highlighted differences in patient desire for spiritual assessment based on patient religiosity, little is known about patient desire for spiritual assessment based on community type, particularly in urban compared to rural communities. We hypothesized that, given demographic trends which show a higher degree of religiosity in rural areas, patients in rural communities will be more likely to desire spiritual assessment. METHODS: In this cross-sectional study of 141 adult primary care patients in rural and urban Colorado at non-religiously affiliated clinics, we surveyed patient demographic information, measures of religiosity, patient desire for spiritual assessment, and frequency of spiritual assessment in practice. Univariate logistic regression analyses were used to compare the two populations. RESULTS: In both Denver County (urban) and Lincoln County (rural) over 90% of patients identified as religious, spiritual, or a combination of the two. Thirty eight percent (38.3%) of patients in Denver County and 49.1% of patients in Lincoln desired spiritual assessment. Over 97% of patients in both areas reported rarely or never being asked about their R/S within the past year. For patients who have had five or more clinic visits in the past year, more than 91% in both areas stated they have never or rarely been asked about their beliefs. CONCLUSIONS: While the majority of patients in this study identify as religious or spiritual and many patients desire spiritual assessment, the majority of patients have never or rarely been asked about their spirituality within the past year. This demonstrates a significant gap between patient preference and provider practice of spiritual assessment in the primary care setting, which was similar in both rural and urban settings. This highlights the need for interdisciplinary focus on spiritual assessment and incorporation of patient R/S beliefs in medical care to provide holistic patient care and improve health outcomes.

Goal-Concordant Care in the Era of Advanced Stroke Therapies.

Stroke is a leading cause of disability and mortality worldwide. Recent advances in stroke care now enable patients with severe ischemic stroke owing to large vessel occlusion to safely undergo endovascular thrombectomy (EVT) up to 24 hours since their time of last known well, with the goal of improving functional outcomes by recanalization of the occluded vessel and reperfusion of downstream ischemic brain tissue. The objective of this analysis is to highlight clinical and ethical challenges related to ensuring goal-concordant care in this era of unprecedented advances in acute stroke care. Specifically, there is a salient challenge of whether advanced therapies such as EVT may be justifiably considered comfort focused, given their potential to preempt accumulated neurologic disability and suffering at the end of life. Through the lens of a patient case, we discuss key challenges, lessons learned, and suggestions for future care and research endeavors at the intersection of acute stroke care and palliative care principles. Although therapies such as thrombolysis and EVT may be considered aggressive prima facie, their potential to ameliorate additional disability and potential suffering at the end of life prompt close consideration of the proper role of these therapies on a case-by-case basis in the context of comfort-focused care. Modification to the workflow for EVT evaluations may facilitate goal-concordant care and timely resource allocation, especially for cases that involve hospital-to-hospital transfers for advanced stroke care.

Walls.

In a field that strives to care for patients and families together, what can palliative care clinicians do when patients' families are physically absent? The Covid-19 pandemic has put both literal and figurative walls between health care professionals and families. How health care workers respond to these disconnections might have a lasting impact on patients, on families, and on our practice. Recently, I saw this in the case of a patient our palliative care team was consulted to see. Mr. B was minimally responsive and dying from multisystem organ failure of unclear etiology. As in other cases during this pandemic, our team became a facilitator of interaction between the patient and the physically absent family, seeing an intimacy we normally would not, in this case, by being present while our intern held the phone to Mr. B's ear for an end-of-life call from his wife, son, and daughter. Such moments force us clinicians to be even more present for our families and patients, and they allow us to bear witness to the strength and sadness and love that we might otherwise miss.

Museum-Based Education: A Novel Educational Approach for Hospice and Palliative Medicine Training Programs.

Objective: To describe museum-based education (MBE) as an emerging pedagogy in our four hospice and palliative medicine (HPM) training programs. Background: MBE is a pedagogy that uses art and the museum space to promote a variety of skills, including reflective practice, self-awareness, and interprofessional teamwork. While MBE has been extensively applied and studied in undergraduate medical education, it is not a common educational strategy in HPM education. Methods: We summarize the characteristics of MBE initiatives in our institutions, including makeup of fellowship class, MBE site, facilitators, exercises, number of sessions, number of years using MBE, and expenses and funding to support MBE in our training programs. Results: To date, we have used MBE to train 104 HPM fellows. Evaluations from MBE have been overwhelmingly positive. Conclusion: MBE holds great promise as a pedagogic strategy to improve metacognition, tolerance of uncertainty, appreciation of multiple perspectives, and teamwork among hospice and palliative care professionals. Further research is needed to identify best practices for MBE across HPM training programs.

Social Media Perceptions of Legacy-Making: A Qualitative Analysis.

Background: Individuals with life-limiting illnesses experience psychotherapeutic benefits of transmitting their life's history to loved ones; however, the scope and depth of what warrants preservation and who ought to undertake such activity remains less clear. Furthermore, individuals with conditions that afflict the brain face barriers regarding the timing and structure of such interventions. We analyzed data from an online social media forum to understand perceptions of legacy-making. Methods: This is a qualitative descriptive study of Slashdot, a social media website with a focus on science, technology, and politics. In August 2010, a Slashdot user inquired about a loved one with a life-limiting illness and asked for opinions on how to preserve the individual's memories. We conducted a content analysis of the individual comments related to digital legacy-making to identify common themes. Results: Slashdot users contributed 527 replies to the initial inquiry. Users often included bereaved individuals who offered input on the need to preserve information about a loved one, the modalities in which to preserve, and what type of content to preserve. Three key themes emerged related to legacy-making: (1) capture the individual's essence and avoid the minutia, (2) live for now to avoid prolonged suffering, and (3) recognize the equal benefits to all who memorialize. Conclusions: Users in a social media forum articulated the value of capturing their loved ones' essence for posterity, which many believed would help them to avoid prolonged grief. These findings have implications for the development and timing of personalized psychosocial interventions as well as informing application development of evidence-based digital legacy systems.

Adult palliative care in the USA: information-seeking behaviour patterns.

OBJECTIVE: Acceptance of palliative care (PC) in the USA has increased in recent decades with the growing number of recommendations for adoption from professional organisations. However, there are prevalent public misperceptions of PC that may prevent broader utilisation. This study seeks to identify the primary sources for PC information, which may help identify sources of misperception and improve PC messaging. METHODS: We analysed the 2018 Health Information National Trends Survey (HINTS), a representative survey of USA population knowledge regarding cancer-related information. This is the first iteration to include questions on PC. Prevalence of preferred PC information sources was estimated; multivariable logistic regression invoking stepwise variable selection was used to determine associations with information-seeking behaviour. RESULTS: Our study cohort consisted of 1127 American adults who were familiar with PC. Overall, 59.3% and 34.0% relied primarily on healthcare providers and internet or printed media, respectively. In stepwise regression models of seeking information from healthcare providers, predictors and their relative contributions to the multivariable model were higher education attainment (58.7%), age ≥60 years (21.5%) and female sex (15.0%). Higher income was the most robust predictor (35.1%) of reliance on internet and printed media for information, followed by being currently married (26.2%). CONCLUSIONS: Overall, American adults rely on healthcare providers and media for PC information, with significant sociodemographic differences in information-seeking behaviour. These findings may be used to inform strategies to promote accurate PC awareness.

Patterns of Palliative Care Beliefs Among Adults in the U.S.: Analysis of a National Cancer Database.

BACKGROUND: Palliative care (PC) is associated with increased quality of life for individuals with life-limiting illnesses. Despite growing recognition of the need for public advocacy and involvement, data on public perception of PC are limited. We sought to examine patterns of beliefs, sociodemographic differences, and the impact of information source on perceptions of PC. MEASURES AND INTERVENTION: Data were analyzed from the 2018 Health Information National Trends Survey, a representative sample of public knowledge on cancer-related information. Prevalence of perceptions was estimated among adults who self-identified as knowledgeable about PC; multivariable logistic regression invoking stepwise variable selection was used to determine associations with perceptions. OUTCOMES: Overall, 42.5% automatically thought of death when thinking about PC, and 31.7% equate PC with hospice care. Lower proportions perceived PC as incompatible with curative medical therapy: 15.1% believed PC means giving up, and 14.5% believed PC requires the discontinuation of other treatments. Perceptions varied by age, race, education attainment, income, and marital status. In adjusted models, source of PC information was not related to differences in PC perception: PC is giving up (P ≥ 0.28), requirement to stop curative therapy (P ≥ 0.07), and equation with hospice care (P ≥ 0.29). CONCLUSIONS: Six in every 10 American adults knowledgeable about PC have at least one documented misperception, with differential beliefs by sociodemographic groups. Source of information had little impact on PC beliefs. These findings may help focus future measures to educate the public about the role of PC in health care and address gaps in knowledge.

Description and Early Outcomes of a Comprehensive Curriculum Redesign at the Northwestern University Feinberg School of Medicine.

In 2012, the Northwestern University Feinberg School of Medicine launched a redesigned curriculum addressing the four primary recommendations in the 2010 Carnegie Foundation for the Advancement of Teaching report on reforming medical education. This new curriculum provides a more standardized evaluation of students' competency achievement through a robust portfolio review process coupled with standard evaluations of medical knowledge and clinical skills. It individualizes learning processes through curriculum flexibility, enabling students to take electives earlier and complete clerkships in their preferred order. The new curriculum is integrated both horizontally and vertically, combining disciplines within organ-based modules and deliberately linking elements (science in medicine, clinical medicine, health and society, professional development) and threads (medical decision making, quality and safety, teamwork and leadership, lifestyle medicine, advocacy and equity) across the three phases that replaced the traditional four-year timeline. It encourages students to conduct research in an area of interest and commit to lifelong learning and self-improvement. The curriculum formalizes the process of professional identity formation and requires students to reflect on their experiences with the informal and hidden curricula, which strongly shape their identities.The authors describe the new curriculum structure, explain their approach to each Carnegie report recommendation, describe early outcomes and challenges, and propose areas for further work. Early data from the first cohort to progress through the curriculum show unchanged United States Medical Licensing Examination Step 1 and 2 scores, enhanced student research engagement and career exploration, and improved student confidence in the patient care and professional development domains.

The Evolution and Dissemination of the Education in Palliative and End-of-Life Care Program.

BACKGROUND: Even with growing numbers of fellowship-trained palliative care providers, primary palliative care knowledge and skills are needed to meet the national demands for palliative care. The Education in Palliative and End-of-Life Care (EPEC) Program has been one model of training clinicians in primary palliative care skills. In our second 5 years of development and dissemination, we have focused on adapting EPEC to different specialties. OBJECTIVE: Our aim was to describe the development of EPEC adaptations and document the dissemination of our curriculum. METHODS: The study design was a survey of EPEC trainers and documentation of other dissemination efforts via literature and Internet searches. Our subjects were all EPEC trainers and end-learners of our curriculum. We measured dissemination and teaching efforts by our trainers and evidence of EPEC use via literature and EPEC's searches. RESULTS: In Internet second 5 years of active development, teaching, and dissemination, we have created five major adaptations (EPEC-Oncology, EPEC-Oncology-Canada, EPEC-Emergency Medicine, EPEC-India, and EPEC for Veterans) and trained more than 1000 trainers. Through the efforts of these Trainers and our online dissemination, more than 74,000 reported end-learners have been taught parts of the EPEC curriculum. In addition, we discovered multiple medical school courses, continuing medical education (CME), courses and specialty guidelines that have incorporated material from EPEC. CONCLUSIONS: In its second 5 years, EPEC remains a robust platform for adaptation to new specialties and for dissemination of primary palliative care knowledge.