Calm your Nerves: Clinical Tips from Neuropalliative Experts to Ease your Neurophobia

Key Message: People with neurological illnesses are increasingly referred to palliative care, with needs that are often distinct from those of other palliative care patients. Our talk will provide pearls for meeting the needs of neurological patients, in particular those with ALS, Parkinson’s, and seizures, to quell clinician anxiety and improve care.

Abstract:

Introduction: People with serious neurological illnesses are increasingly recognized as having extensive palliative care needs. Unfortunately, palliative care training often does not include a lot of experience caring for these patients. This can lead to “neurophobia,” or fear of the complexities of neurologic diseases, as providers may feel unprepared to manage people with complex neurological diseases or neurologic complications of other illnesses.

Objectives: The purpose of this concurrent session is to address some of the highest-yield, practical aspects of managing common symptoms of neurologic diseases encountered in hospice and palliative medicine, including Amyotrophic Lateral Sclerosis (ALS), Parkinson’s Disease and related disorders, and seizures/epilepsy.

Methods: Content will be presented by an interdisciplinary team including an advance practice palliative care pharmacist, a palliative care social worker practicing in outpatient neuropalliative care, two palliative neurologists who practice in inpatient and outpatient settings, and a palliative care physician practicing in outpatient neuropalliative care.

Results: We will begin with interactive reflection, during which audience members will share the reasons for their “neurophobia.” Then, for each disease, we will present an exemplary case to address: 1) common presentations, disease trajectories, and prognostication, 2) pharmacologic and non-pharmacologic approaches to symptom management, and 3) psychosocial aspects of care for patients and caregivers specific to the illness. We will also highlight specific considerations for hospice and end-of-life care. We will use multiple choice questions to engage the audience and check for understanding.

Conclusion: By the end of this session, participants will feel more confident in their ability to provide hospice and palliative care to people with common neurological diseases including ALS, Parkinson’s Disease, and seizures.

References: Mendlik MT, et al. Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Neurologic Illnesses. J Palliat Med. 2019;22(2):193-198.

Kluger BM, Miyasaki J, Katz M, Galifianakis N, Hall K, Pantilat S, Khan R, Friedman C, Cernik W, Goto Y, Long J, Fairclough D, Sillau S, Kutner JS. Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial. JAMA Neurol. 2020 May 1;77(5):551-560. doi: 10.1001/jamaneurol.2019.4992. PMID: 32040141; PMCID: PMC7042842.

Kluger BM, Miyasaki J, Katz M, Galifianakis N, Hall K, Pantilat S, Khan R, Friedman C, Cernik W, Goto Y, Long J, Fairclough D, Sillau S, Kutner JS. Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial. JAMA Neurol. 2020 May 1;77(5):551-560. doi: 10.1001/jamaneurol.2019.4992. PMID: 32040141; PMCID: PMC7042842.