Online palliative care curriculum: contextual adaptation for Nigerian healthcare workers.

OBJECTIVES: This study reports on a yearlong sequence of three periodic, virtual trainings in primary palliative care for healthcare professionals across Nigeria. Our overall objective was to determine the impact of the full course on participants' attitudes, knowledge, skills and plans to implement and deliver palliative care in their local contexts. METHODS: The curriculum for this programme was codeveloped by a team of USA and Nigerian palliative care professionals and delivered via three 3-day virtual sessions. Daily surveys, knowledge tests and end-of-training surveys were administered to participants electronically. Demographics, knowledge scores, confidence levels and self-reported achievement were analysed using descriptive statistics. RESULTS: Pretraining and post-training knowledge scores showed significant improvement with average gains of 10.3 percentage points in training 1 (p<0.001) to 11.7 percentage points in training 2 (p=0.01). More than three-quarters of participants improved their test scores. Most participants (89.4%-100%) agreed that they had achieved the daily learning objectives across all trainings. Nearly 100% of participants reported that they felt more empowered as healthcare workers, more confident in their decision-making and more comfortable communicating with patients and other healthcare workers about palliative care. CONCLUSIONS: Healthcare workers in Nigeria demonstrated increased knowledge and confidence in providing palliative care as a result of an adapted virtual training programme. Further research is needed to (1) demonstrate feasibility for online trainings in similar resource-limited settings and (2) evaluate impact on patient-centred outcomes.

The Value of Screening for a History of Incarceration in the Palliative Care Setting.

The United States (US) has one of the highest rates of incarceration in the world. Due to the aging of the US population as a whole and limited opportunities for early release, the proportion of older people in prison continues to rise. Some correctional health systems have adopted geriatric and palliative care principles to better care for this aging population, many of whom die in prison. However, not everyone who grows old in prison will die behind bars. In this article, we explore existing literature that highlights the unique physical, cognitive, and psychosocial challenges that formerly incarcerated patients face. We proceed to argue that palliative care providers should screen for a history of incarceration to identify and address the needs of this patient population. We also offer strategies to create a safe, welcoming environment to discuss past traumas related to these patients' time in prison.

Examining Moderation of Dignity Therapy Effects by Symptom Burden or Religious/Spiritual Struggles.

CONTEXT: Dignity therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes. OBJECTIVE: To explore the effects of symptom burden and R/S struggles on DT outcomes. METHODS: This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the seven-item dignity impact scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S). RESULTS: DT effects on DIS were significant for patients with both low (P = 0.03) and moderate/high symptom burden (P = 0.001). They were significant for patients with low (P = 0.004) but not high R/S struggle (P = 0.10). Moderation effects of symptom burden (P = 0.054) and R/S struggle (P = 0.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures. CONCLUSION: Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions.

Engaging Mortality: Effective Implementation of Dignity Therapy.

Background: Patients consider the life review intervention, Dignity Therapy (DT), beneficial to themselves and their families. However, DT has inconsistent effects on symptoms and lacks evidence of effects on spiritual/existential outcomes. Objective: To compare usual outpatient palliative care and chaplain-led or nurse-led DT for effects on a quality-of-life outcome, dignity impact. Design/Setting/Subjects: In a stepped-wedge trial, six sites in the United States transitioned from usual care to either chaplain-led or nurse-led DT in a random order. Of 638 eligible cancer patients (age ≥55 years), 579 (59% female, mean age 66.4 ± 7.4 years, 78% White, 61% stage 4 cancer) provided data for analysis. Methods: Over six weeks, patients completed pretest/posttest measures, including the Dignity Impact Scale (DIS, ranges 7-35, low-high impact) and engaged in DT+usual care or usual care. They completed procedures in person (steps 1-3) or via Zoom (step 4 during pandemic). We used multiple imputation and regression analysis adjusting for pretest DIS, study site, and step. Results: At pretest, mean DIS scores were 24.3 ± 4.3 and 25.9 ± 4.3 for the DT (n = 317) and usual care (n = 262) groups, respectively. Adjusting for pretest DIS scores, site, and step, the chaplain-led (ß = 1.7, p = 0.02) and nurse-led (ß = 2.1, p = 0.005) groups reported significantly higher posttest DIS scores than usual care. Adjusting for age, sex, race, education, and income, the effect on DIS scores remained significant for both DT groups. Conclusion: Whether led by chaplains or nurses, DT improved dignity for outpatient palliative care patients with cancer. This rigorous trial of DT is a milestone in palliative care and spiritual health services research. clinicaltrials.gov: NCT03209440.

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.

Infective Endocarditis-Update for the Perioperative Clinician.

Infective endocarditis is a common pathology routinely encountered by perioperative physicians. There has been a need for a comprehensive review of this important topic. In this expert review, the authors discuss in detail the incidence, etiology, definition, microbiology, and trends of infective endocarditis. The authors discuss the clinical and imaging criteria for diagnosing infective endocarditis and the perioperative considerations for the same. Other imaging modalities to evaluate infective endocarditis also are discussed. Furthermore, the authors describe in detail the clinical risk scores that are used for determining clinical prognostic criteria and how they are tied to the current societal guidelines. Knowledge about native and prosthetic valve endocarditis, with emphasis on the timing of surgical intervention-focused surgical approaches and analysis of current outcomes, are critical to managing such patients, especially high-risk patients like those with heart failure, patients with intravenous drug abuse, and with internal pacemakers and defibrillators in situ. And lastly, with the advancement of percutaneous transcatheter valves becoming a norm for the management of various valvular pathologies, the authors discuss an in-depth review of transcatheter valve endocarditis with a focus on its incidence, the timing of surgical interventions, outcome data, and management of high-risk patients.

Clinician Self-Disclosure in Palliative Care: Describing a Taxonomy and Proposing a Communication Tool.

While patient self-disclosure is expected and necessary in the clinical setting, clinicians generally minimize their own self-disclosure, a practice largely guided by the boundaries of the fiduciary relationship. At the same time, many clinicians can recall a time when they made a self-disclosure to a patient, and it seemed to benefit the treatment relationship, if not the treatment itself. We reviewed literature from a variety of fields describing opinions, theories and limited data about the effects of clinician self-disclosure. Based on our findings, we posit that clinician self-disclosure has the potential to be a beneficial communication tool in palliative medicine, but like any intervention, it is not without risks. Thus, we propose a potential strategy to guide clinicians in thinking about self-disclosures.

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.

Oncology distress screening within predominately Black Veterans: Outcomes on supportive care utilization, hospitalizations, and mortality.

BACKGROUND: We evaluated whether patients' initial screening symptoms were related to subsequent utilization of supportive care services and hospitalizations, and whether patient-level demographics, symptoms, hospitalizations, and supportive care service utilization were associated with mortality in primarily low-income, older, Black Veterans with cancer. METHODS: This quality improvement project created collaborative clinics to conduct cancer distress screenings and refer to supportive care services at an urban, VA medical center. All patients completed a distress screen with follow-up screening every 3 months. Supportive care utilization, hospitalization rates, and mortality were abstracted through medical records. Poisson regression models and cox proportional hazard models were utilized. RESULTS: Five hundred and eighty five screened patients were older (m = 72), mostly Black 70% (n = 412), and had advanced cancer 54%. Fifty-eight percent (n = 340) were screened only once with 81% (n = 470) receiving ≥1 supportive care service and 51.5% (n = 297) being hospitalized ≥1 time 18 months following initial screen. Symptom severity was significantly related to number of hospitalizations. Low mood was significantly related to higher supportive services (p < 0.001), but not hospitalizations (p ≥ 0.52). Pain, fatigue, physical function, nutrition, and physical symptoms were significantly associated with more supportive services and hospitalizations (p < 0.01). Twenty percent (n = 168) died; Veterans who were Black, had lower stage cancers, better physical health, and utilized less supportive care services had lower odds of mortality (p ≤ 0.01). CONCLUSION: Individuals with elevated distress needs and those reporting lower physical function utilized more supportive care services and had higher hospitalization rates. Lower physical function, greater supportive care use, higher stage cancer, and being non-Black were associated with higher odds of death.

Palliative Care Challenges in Nigeria: A qualitative study of interprofessional perceptions.

CONTEXT: Palliative care awareness, education and practice vary widely across global health systems, especially throughout low- and middle-income countries such as Nigeria. Unfortunately, qualitative investigations into the context, experiences and challenges of Nigerian health care professionals providing palliative care in these settings are still underrepresented in the literature. OBJECTIVES: The aim of this study was to better understand the perceptions of palliative care providers in Nigeria. METHODS: The authors conducted an online survey of health professionals caring for patients with palliative care and end of life needs. Survey participants were recruited via convenience sampling from a palliative care training program in Lagos, Nigeria. RESULTS: 27 palliative care program participants (12 physicians, seven nurses, four pharmacists, two psychiatrists and two physiotherapists) responded to the two-question survey. 39 free text responses were collected and analyzed. A majority (33%, n = 13) of responses reported challenges associated with caring for patients with cancer. Suboptimal pain management was the second most common response type (18%, n = 7). Other significant responses included caring for patients with comorbidities (13%, n = 5), patients seeking spiritual care (8%, n = 3) and patients who were unable to afford standard treatment (5%, n = 2). Uncategorized responses (23%, n = 9) included experiences caring for patients with injuries sustained in military operations and COVID-19, among others. CONCLUSION: These results provide valuable insights into the palliative care experiences and challenges of an interdisciplinary set of health care practitioners providing palliative care in Nigeria. Further research is needed to elucidate the facilitators and barriers of delivering palliative care in similar settings.

Regional adaptation of the education in palliative and end-of-life Care Pediatrics (EPEC-Pediatrics) curriculum in Eurasia.

BACKGROUND: Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia. METHODS: Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses. RESULTS: A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p < 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course. CONCLUSIONS: We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia.

Death Anxiety and Correlates in Cancer Patients Receiving Palliative Care.

Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiety/distress for associations with physical and psychosocial factors. Design: Ancillary to a randomized clinical trial (RCT) of Dignity Therapy (DT), we enrolled a convenience sample of 167 older adults in the United States with cancer and receiving outpatient palliative care (mean age 65.9 [7.3] years, 62% female, 84% White, 62% stage 4 cancer). They completed the DADDS and several measures for the stepped-wedged RCT, including demographic factors, religious struggle, dignity-related distress, existential quality of life (QoL), and terminal illness awareness (TIA). Results: DADDS scores were generally unrelated to demographic factors (including religious affiliation, intrinsic religiousness, and frequency of prayer). DADDS scores were positively correlated with religious struggle (p < 0.001) and dignity-related distress (p < 0.001) and negatively correlated with existential QoL (p < 0.001). TIA was significantly nonlinearly associated with both the total DADDS (p = 0.007) and its Finitude subscale (p ≤ 0.001) scores. There was a statistically significant decrease in Finitude subscale scores for a subset of participants who completed a post-DT DADDS (p = 0.04). Conclusions: Findings, if replicable, suggest that further research on death anxiety and prognostic awareness in the context of palliative medicine is in order. Findings also raise questions about the optimal nature and timing of spiritual and psychosocial interventions, something that might entail evaluation or screening for death anxiety and prognostic awareness for maximizing the effectiveness of care.

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.

Building the Nigerian Palliative Care Workforce: An Interdisciplinary Distance Learning Training Program.

Background: Education and capacity building in palliative care are greatly needed in Nigeria. Currently, two institutions integrate palliative care into the undergraduate medical curriculum and no post graduate training exists. A team from the University of Lagos in Nigeria and Northwestern University in the US collaborated to design, implement, and evaluate a 12-hour virtual palliative care training program for Nigerian health professionals. Objective: This study investigated the impact of the first session of the training program on healthcare professionals' knowledge, skills, attitudes, and confidence in palliative care. Methods: The Education in Palliative and End-of-Life (EPEC) curriculum and the Kenya Hospices and Palliative Care Association (KEHPCA) curriculum were used as foundations for the program and adapted for the Nigerian context. Delivered online, the training focused on goals of palliative care, whole patient assessment, communication skills, pain management, psychosocial issues, palliative care in COVID, oncology, and HIV. A mixed-methods evaluation based on Kirkpatrick's evaluation framework was used and data were gathered from surveys and focus groups. Findings: Thirty-five health professionals completed the training. The training had a positive impact on knowledge, skills, and attitudes. Confidence in providing end-of-life care increased from 27.3% to 92.9% while confidence in prescribing medication to relieve symptoms at the end of life increased from 42.9% to 92.0%. Performance on multiple-choice knowledge tests increased by 10% (p < 0.01). All participants stated that they would recommend the program to a peer while 96.4% reported the program was relevant to the Nigerian context. Qualitative analysis suggested that the training would help participants provide more holistic care for patients, communicate better, and change how they interacted with families. Topics to be addressed in future training were identified. Conclusions: This virtual training can be an important element in palliative care capacity building in Nigeria and represents a model for global health collaboration.

What palliative care physicians wish neurologists knew.

This chapter describes several features of palliative care that we believe can assist neurologists in caring for patients with serious illness. These features include the importance of recognizing suffering, the central of total pain (including physical, emotional, spiritual, and existential aspects), structural features of palliative care such as the distinction been palliative care and hospice, and the concept of primary and specialty palliative care. Structural features of palliative care such as interdisciplinary teamwork, approaches to self-care, and a perspective on prognostic uncertainty are also considered. Throughout this chapter, the focus is on ways in which neurologists can integrate these approaches in caring for patients and their families.