Citations

Abstract Background Compared to Parkinson's disease, atypical parkinsonian disorders (APD) are characterized by a more rapidly progressive course, often leading to profound disability. Effective communication between clinicians, patients, and care partners is essential to support patient‐centered care and shared decision‐making. However, most neurologists lack formal training in serious illness conversations (SIC). Objective To develop a practical SIC guide tailored to the needs of individuals with APD. Methods Members of the CurePSP Centers of Care Palliative Care Working Group, in collaboration with a SIC education expert (TC), developed a SIC guide for APD. A literature review was conducted, followed by online consensus‐building rounds. Results Applying core communication principles—such as active listening, pausing, naming and validating emotions, assessing understanding, and reframing—can foster alignment between clinicians, patients, and their care partners. Navigating the balance between maintaining hope and providing realistic, anticipatory guidance remains challenging but best achieved by honest, compassionate dialogue. Four practical guides were developed, addressing common and often challenging scenarios: delivering an APD diagnosis, eliciting patient goals in the context of changing clinical status, addressing safety concerns, and discussing quality of life and end‐of‐life considerations. Conclusions Patients and their care partners living with APD benefit greatly from individualized guidance, and honest, empathic communication is a vital part of patient‐centered care. While existing SIC frameworks offer valuable foundations, further research is needed to optimize their adaptation for APD—identifying best timing, specific frameworks, relevant outcome measures, and education strategies to build team‐wide competency.

AbstractThe care of a patient with neurologic disease at end-of-life requires expertise in addressing advance care planning, hospice, symptom management, and caregiver support. Neurologists caring for patients with advanced neurologic disease often identify changes in disease trajectory, functional status, or goals of care that prompt discussions of advance care planning and hospice. Patients nearing end-of-life may develop symptoms such as dyspnea, secretions, delirium, pain, and seizures. Neurologists may be the primary clinicians managing these symptoms, particularly in the hospitalized patient, though they may also lend their expertise to non-neurologists about expected disease trajectories and symptoms in advanced neurologic disease. This article aims to help neurologists guide patients and caregivers through the end-of-life process by focusing on general knowledge that can be applied across diseases as well as specific considerations in severe stroke and traumatic brain injury, amyotrophic lateral sclerosis, Parkinson's disease, and dementia.

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease with a median survival of about 3 years. An ALS multidisciplinary team can provide primary palliative care and improve outcomes and quality of life for patients. Feeding tube insertion may be considered for patients with significant weight loss, or respiratory insufficiency. While radiologically inserted gastrostomy (RIG) tube placement may be an option, further studies are required to determine its best timing and appropriateness. This study’s objectives were to evaluate the feasibility and outcomes of RIG tube placement in ALS patients over a 90-day follow-up period through the assessment and primary palliative care provided by the multidisciplinary team. This retrospective study reviewed the placement of 16 or 18 French RIG-tube without intubation or endoscopy for 36 ALS patients at a single center between April 2019 and December 2021. Measures included ALS Functional Rating Scale-Revised (ALSFRS-R) scores to determine the ALS stage. Demographic, clinical, procedural, and follow-up data were reviewed. Results showed that the RIG tube placement had a low rate of minor adverse events (11%) and no major procedure-related adverse events. The mean ALSFRS-R score at the time of procedure in subjects who died within 90 days was lower than of those alive beyond 90 days ( P = .04). This study found that RIG-tube placement is a safe and effective way to manage dysphagia in ALS patients and highlights the importance of educating members of the multidisciplinary clinic in palliative care principles to determine the appropriateness of RIG tube placement.

Pain is a common symptom for patients with advanced illness. Palliative care (PC) clinicians are experts in pharmacologic and nonpharmacologic treatment of pain and other symptoms for these patients. True multimodal pain control should include consideration of interventional procedures and pumps to improve difficult-to-manage pain. This article, written by clinicians with expertise in interventional pain and PC, outlines and explains many of the adjunctive and interventional therapies that can be considered for patients with pain in the setting of serious illness. Only by understanding and considering all available options can we ensure that our patients are receiving optimal care.