"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. METHODS: The course consisted of 12 modules, one per every four weeks, beginning July 2022. Each module is based on a case and relevant topics. Course content was divided into three streams (Neurology Basics, Palliative Care Basics, and Neuropalliative Care Essentials) of which two were optional and one was mandatory, and consisted of classroom sessions, webinars, and an in-person skills session. Evaluation of learners consisted of multiple choice questions and written assignments for each module. Evaluation of the course was based on semi-structured qualitative interviews conducted with both educator and learner, the latter of which will be published separately. Audio files were transcribed and underwent thematic analysis. For the discussion of the results, Khan's e-learning framework was used. RESULTS: Ten of the 12 participating educators were interviewed. Of the educators, three identified as mid-career and seven as senior faculty, ranging from six to 33 years of experience. Nine of ten reported an academic affiliation and all reported association with a teaching hospital. Themes identified from the educators' evaluations were: bridging the global gap, getting everybody on board, defining the educational scope, investing extensive hours of voluntary time and resources, benefiting within and beyond the curriculum, understanding the learner's experience, creating a community of shared learning, adapting future teaching and learning strategies, and envisioning long term sustainability. CONCLUSIONS: The first year of a novel, international, hybrid, and asynchronous neuropalliative care curriculum has been completed, and its educators have described both successes and avenues for improvement. Further research is planned to assess this curriculum from the learner perspective.

Palliative Care in Neuro-oncology.

Historically, the practice of neurology as an independent subspecialty from internal medicine began in Europe and the United States in the 1930s. The American Academy of Neurology (AAN) was founded 75 years ago in 1948, solidifying its emergence as a stand-alone discipline of medicine. In 1967, St. Christopher's Hospice, the first free standing hospice home, was opened in London by Dame Cicely Saunders. Dame Saunders is considered a pioneer in the development of the hospice movement, and she embodies the importance of the multi-disciplinary team in the care of the patient, as she began her career as a nurse, then became a social worker and, finally, a physician. A decade later, in 1978, Dr. Balfour Mount, a Canadian urologic cancer surgeon, coined the term "palliative care" ("to improve the quality of life") after having spent time with Dr. Saunders at St. Christopher's some years earlier. The field of palliative care continued to develop as a distinct subspecialty focused on improving quality of life for patients at any age and in any stage of serious illness. In a 1996 position statement, the AAN made clear that the practice of primary palliative care is the responsibility of all neurologists to their patients. Finally, coming full circle, the specialty of neuro-palliative care, a subspecialty not just of neurology but of palliative medicine, became established around 2018. Neuro-palliative care can be seen as a specialty focusing on the holistic approach to symptom management in patients suffering from neurologic disease with the aim of improved symptom control and attention to the psychologic and spiritual aspects of illness.

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. This article provides ten tips for palliative clinicians for caring for patients with MS and their care partners.

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. It is imperative that all neurologists receive quality training in primary palliative care skills. As the subspecialty of neuropalliative care grows, the need for specialty neuropalliative education has arisen. This chapter reviews existing educational initiatives and common neuropalliative-oriented career tracks and identifies opportunities for growth along the continuum of medical education and beyond.

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. The purpose of this article was to provide PC providers with a better understanding of caring for patients with DOC, specifically following anoxic or TBI. Many of the tips acknowledge the uncertainty of DOC and provide strategies to help tackle this dilemma.

The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis.

Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.

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. This article provides 10 tips for palliative clinicians to increase their knowledge and comfort in caring for this important population.

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. A team of neurologists and PC specialists have compiled a list of tips to guide clinicians on how to care for patients having seizures and to support their families/caregivers.

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. RESULTS: All clinics are multidisciplinary, with regular appointments every 3 months and similar appointment times for new visits (60-120 minutes) and follow-up visits (20-45 minutes). Four clinics have an NPC specialist embedded within the ALS clinic, 1 institution has a separate clinic for NPC, and 1 institution has both. The NPC physician at 5 institutions is a neurologist with formal palliative care training and at 1 institution is an internist with formal palliative care training. NPC is part of routine care for all patients at 2 institutions, and the primary reasons for consultation are goals of care (GOC) and severe symptom management. CONCLUSION: NPC is provided to patients with ALS heterogeneously throughout the United States with some variation in services and delivery, but all clinics are addressing similar core needs. Given the poor prognosis and high PC needs, those with ALS are the ideal patients to receive NPC. Future studies are necessary given the paucity of data available to determine best practices and to better define meaningful outcomes.

Top Ten Tips Palliative Care Clinicians Should Know About Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive and fatal neurodegenerative disorder with enormous palliative care (PC) needs that begin at the time of diagnosis. Although it is an uncommon disease, clinicians who work in PC or hospice are likely to encounter ALS somewhat frequently given the needs of patients with ALS with regard to psychosocial support, symptom management, advance care planning (ACP), caregiver support, and end-of-life care. As such, PC clinicians should be familiar with the basic principles of ALS symptoms, treatments, disease course, and issues around ACP. This article, written by a team of neurologists and PC physicians, seeks to provide PC clinicians with tips to improve their comfort and skills caring for patients with ALS and their families.

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. We review and critically evaluate current practices on advance care planning through the analyses of three bioethical challenges pertinent to Parkinson's disease and propose recommendations for each.