"It's not a one-person show" E-learning course in neuropalliative care: A qualitative analysis of participants' educational gains and self-reported outcomes.

Objectives: Patients with progressive neurologic illness still lack access to quality palliative care services. Barriers to the comprehensive provision of neuropalliative care include gaps in palliative care education. To address this barrier, a novel international model of neuropalliative care education e-learning program was launched in 2022.

Communication in Neuropalliative Care.

Serious illness communication needs are high among patients with neurological conditions, from the time of diagnosis to the end of life. This article will highlight unique needs among these patients, strategies for optimizing communication, and techniques to learn and teach these skills along the continuum of a career in neurology.

"So we brought these players together": a qualitative study of educators' experiences to analyze the challenges of creating an e-learning program for neuropalliative care.

Background: In recent years, the subspecialty of neuropalliative care has emerged with the goal of improving the quality of life of patients suffering from neurological disease, though gaps remain in neuropalliative care education and training. E-learning has been described as a way to deliver interactive and facilitated lower-cost learning to address global gaps in medical care. We describe here the development of a novel, international, hybrid, and asynchronous curriculum with both self-paced modules and class-based lectures on neuropalliative care topics designed for the neurologist interested in palliative care, the palliative care physician interested in caring for neurological patients, and any other physician or advanced care providers interested in neuropalliative care.

Top Ten Tips Palliative Care Clinicians Should Know about Multiple Sclerosis.

Multiple sclerosis (MS) is a chronic, immune-mediated, neurodegenerative condition of the central nervous system, with distinct challenges due to its heterogeneous presentation, prognostic uncertainty, and variable clinical course of neurological and non-neurological symptoms and disability. Although there have been significant advances in management of MS, many patients experience disability progression. Despite MS being a frequent cause of neurological disability, particularly in young persons, involvement of palliative care physicians in the care of patients with MS has been limited.

Top Ten Tips Palliative Care Clinicians Should Know About Delivering Specialty-Aligned Palliative Care.

Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups.

Education in neuropalliative care.

The importance and value of providing palliative care for patients with neurologic disease is increasingly recognized. While palliative and neuropalliative specialists may be well-positioned to provide this care, there is a shortage of specialists to address these needs. As a result, much of the upfront palliative care will naturally be provided by the treating neurologist.

Emerging Subspecialties in Neurology: Cortical Careers in Neuropalliative Care.

Serious neurologic illnesses are associated with significant palliative care (PC) needs, including symptom management, complex decision-making, support for caregivers, and end-of-life care. While all neurologists are responsible for the provision of primary PC, there is an increasing need for trained neurologists with expertise in palliative medicine to manage refractory symptoms, mitigate conflict around goals of care, and provide specialized end-of-life care. This has led to the emergence of neuropalliative care (NPC) as a subspecialty.

Development and Dissemination of a Neurology Palliative Care Curriculum: Education in Palliative and End-of-Life Care Neurology.

Despite increasing awareness of the importance of a palliative care approach to meet the needs of persons living with neurologic illness, residency and fellowship programs report meeting this educational need due to a limited pool of neuropalliative care educators and a lack of adequate educational resources. To meet this need, a group of experts in neuropalliative care and palliative medicine leveraged resources from the Education in Palliative and End-of-life Care (EPEC) program and the National Institutes of Nursing Research to create a library of modules addressing topics relevant for neurology trainees, palliative medicine fellows, and clinicians in practice. In this article, we describe the development and dissemination plan of the EPEC Neurology program, initial evidence of efficacy, and opportunities for neurology educators and health services researchers to use these resources.

Top Ten Tips Palliative Care Clinicians Should Know About Disorders of Consciousness: A Focus on Traumatic and Anoxic Brain Injury.

Palliative care (PC) teams commonly encounter patients with disorders of consciousness (DOC) following anoxic or traumatic brain injury (TBI). Primary teams may consult PC to help surrogates in making treatment choices for these patients. PC clinicians must understand the complexity of predicting neurologic outcomes, address clinical nihilism, and appropriately guide surrogates in making decisions that are concordant with patients' goals.

Brain Death Determination and Communication: An Innovative Approach Using Simulation and Standardized Patients.

Context: Palliative medicine clinicians in hospital settings are often involved in the care of patients dying in critical care settings, with a subset from brain death. Brain death is a complex concept, not only for families, but also for clinicians. There is wide variability in adhering to formalized guidelines for brain death determination.

Top Ten Tips Palliative Care Clinicians Should Know About Strokes.

Stroke is a common cause of long-term disability and death, which leaves many patients with significant and unique palliative care (PC) needs. Shared decision-making for patients with stroke poses distinct challenges due to the sudden nature of stroke, the uncertainty inherent in prognostication around recovery, and the common necessity of relying on surrogates for decision-making. Patients with stroke suffer from frequently underrecognized symptoms, which PC clinicians should feel comfortable identifying and treating.

Top Ten Tips Palliative Care Clinicians Should Know About Seizures at the End of Life.

Seizures are physically burdensome and emotionally distressing for patients, families, caregivers, and clinicians. Patients with neurological diseases are at increased risk of having complex, difficult-to-control seizures at the end of life. Palliative care (PC) clinicians asked to provide management of these seizures may not be familiar or comfortable with more complex seizures or epilepsy.

Models of outpatient neuropalliative care for patients with amyotrophic lateral sclerosis.

Objective: To describe some current models of outpatient neuropalliative care (NPC) available to patients with amyotrophic lateral sclerosis at different institutions within the United States.

Methods: Six NPC physicians were asked to contribute written descriptions about the PC available in their ALS clinics. Descriptions were then compiled and assessed for similarities and differences.

Advance care planning in Parkinson's disease: ethical challenges and future directions.

Recent discoveries support the principle that palliative care may improve the quality of life of patients with Parkinson's disease and those who care for them. Advance care planning, a component of palliative care, provides a vehicle through which patients, families, and clinicians can collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patient wishes. While research on this topic is abundant in other life-limiting disorders, particularly in oncology, there is a paucity of data in Parkinson's disease and related neurological disorders.

Dural arteriovenous fistula-induced thalamic dementia: report of 4 cases.

Nonhemorrhagic neurological deficits are underrecognized symptoms of intracranial dural arteriovenous fistulas (dAVFs) having cortical venous drainage. These symptoms are the consequence of cortical venous hypertension and portend a clinical course with increased risk of neurological morbidity and mortality. One rarely documented and easily misinterpreted type of nonhemorrhagic neurological deficit is progressive dementia, which can result from venous hypertension in the cortex or in bilateral thalami.

Seizures Following Ischemic Stroke: Frequency of Occurrence and Impact on Outcome in a Long-Term Population-Based Study.

Background And Purpose: Seizures are a known complication of ischemic stroke (IS). This study assesses the long-term incidence and characteristics of poststroke seizures in a well-defined population.

Methods: Using the Rochester Epidemiology Project medical records-linkage system, we identified all incident cases of IS among Rochester, Minnesota, residents from 1990 to 1994 and followed the patients in the comprehensive medical record through March 2014.

Structured handoff checklists improve clinical measures in patients discharged from the neurointensive care unit.

While up to 80% of medical errors may result from poor communication at clinical transitions of care, there has been relatively little study of the effect of standardized communication tools on clinical quality measures. We prospectively examined the effect of a standardized handoff checklist on clinical outcomes for patients dismissed from the neurointensive care unit. We found that the checklist resulted in significant reductions in patients transferred with inaccurate medication reconciliation and unnecessary urinary catheters.

Palliative Sedation and What Constitutes Active Dying: A Case of Severe Progressive Dystonia and Intractable Pain.

We present the case of a 34-year-old woman with Klippel-Feil syndrome who developed progressive generalized dystonia of unclear etiology, resulting in intractable pain despite aggressive medical and surgical interventions. Ultimately, palliative sedation was required to relieve suffering. Herein, we describe ethical considerations including defining sedation, determining prognosis in the setting of an undefined neurodegenerative condition, and use of treatments that concurrently might prolong or alter end-of-life trajectory.

A novel application of teleneurology: robotic telepresence in supervision of neurology trainees.

Background: Telemedicine is used for specialist consultation, patient evaluation, and remote monitoring. We propose that telemedicine has a valuable role in medical education through facilitating faculty supervision of trainees.

Materials And Methods: We surveyed resident physician trainees and faculty at a single institution who provided service for acute neurologic consultations over 29 months.