End-of-Life and Hospice Care in Neurologic Diseases.

The 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.

Collaborative Integration of Palliative Care in Critically Ill Stroke Patients in the Neurocritical Care Unit: A Single Center Pilot Study.

INTRODUCTION: Patients admitted to the Neurocritical Care Unit (NCCU) with moderate-to-severe acute strokes, along with their surrogate decision makers, have the potential for unrecognized or unmet emotional and psychological needs. Our primary objective was to determine if early integration of palliative care consultations within this cohort was feasible and would impact understanding, decision-making and emotional support to patients and their surrogate decision makers. Our secondary objective was to evaluate the long-term impact of early palliative care assessment on the development of post-traumatic stress disorder (PTSD). METHODS: This was a single center prospective pilot study. Patients with moderate-to-severe ischemic and hemorrhagic strokes were randomized into two arms. The control arm received standard intensive care and the intervention arm received an additional early palliative care consultation within 72 hours of hospitalization. Study assessments with the participants were obtained on day 1-3, and day 5-7 of care with comparisons of total scores on the Questionnaire on Communication (QOC), Decisional Conflict Scale (DCS), and Hospital Anxiety and Depression Scale (HADS). Furthermore, comparisons of HADS and PTSD DSM-5 (PCL- 5) scores were completed at 3 months. Linear mixed effects models were conducted to examine the association between intervention and participant's scores. RESULTS: A total of 22 participants were enrolled between February 2019 and April 2020. Statistically significant improvement in scores was seen in the total HADS score (p=0.043) and PCL5 score (p=0.033) at 3 months following intervention. CONCLUSION: Collaboration between the intensive care and palliative care team with early palliative assessment may be beneficial in lowering anxiety, depression and PTSD symptoms in critically ill stroke patients and their caregivers. Further research is needed to validate these findings.

Radiologically Inserted Gastrostomy Tube Placement Guided by the Assessment and Primary Palliative Care Provided by an Amyotrophic Lateral Sclerosis Multidisciplinary Clinic: A Single-Arm Retrospective Clinical Study.

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.

Utility of routine surface electrophysiology to screen for functional tremor prior to surgical treatment of essential tremor.

Background: Patients with functional tremor may be clinically misdiagnosed as "medication-refractory" essential tremor (ET) and referred for surgical treatment. Electrophysiology can screen for functional tremor and avoid inappropriate surgery. Objective: To report the utility of surface electrophysiology (SEMG) to screen for functional tremor in patients referred for ET surgery. Methods: Retrospective review of consecutive ET patients referred to the Mayo Clinic DBS clinic over 1.5 years. Included subjects had a clinical diagnosis of medication-refractory ET and completed presurgical workup including routine SEMG tremor study. Results: Of 87 subjects, 9 (10%) were clinically suspected of functional tremor by the DBS neurologist. Electrophysiology confirmed functional tremor features in 7/9 and ET in the other 2/9; and newly identified 5 additional cases of functional tremor. There were 12 total confirmed cases of functional tremor: isolated in 1, and mixed functional tremor and ET in 11. Of 11 mixed patients, 6 with mild functional overlay were approved for surgery. The remaining 5 patients with moderate-severe functional overlay and the single patient with isolated functional tremor were referred to the functional tremor motor retraining program. Of these, 1 patient with mixed tremor had residual disabling organic ET after program completion and was later approved for surgery. Thus, 5/87 patients (6%) avoided unnecessary surgery. Conclusions: Functional tremor may frequently overlay "medication-refractory" ET amongst patients referred for surgery, affecting 1 of 7 patients in our quaternary referral DBS center. Electrophysiology studies are useful to routinely screen patients and prevent unnecessary surgery.

Top Ten Tips Palliative Care Clinicians Should Know About Interventional Pain and Procedures.

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.