Interdisciplinary Management: Amyotrophic Lateral Sclerosis and Surgical Airways - August 22, 2024
Course description:
Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive neurodegenerative disease which leads to loss of motor function in the limb and bulbar muscles and typically death due to respiratory failure within 3-5 years from onset. In the United States, approximately 5% of persons with ALS will pursue invasive mechanical ventilation with tracheostomy with a goal of extending life expectancy. Due to the uncommon nature of this procedure for persons with ALS, there is scarce literature on best practices to optimize care and long-term management for these individuals. The needs of persons with ALS with or without invasive mechanical ventilation and a tracheostomy are unique from other chronically ventilated populations due to several factors, including the progressive nature of the disease and prominent bulbar weakness. The panelists will present several case scenarios and participate in a moderated discussion with the audience.
Course objectives:
1. Describe the effect of invasive mechanical ventilation on symptom management in ALS, including pain and anxiety control, communication and swallowing
2. Provide two examples of surgeries that may be considered for intractable aspiration following initiation of tracheostomy with invasive mechanical ventilation in ALS
3. Discuss special considerations for end of life for a person with ALS with tracheostomy and invasive mechanical ventilation.
Speakers:
Ileana Howard, MD
Ileana Howard is the Medical Co-Director of the ALS Center of Excellence at the VA Puget Sound in Seattle, Washington, where she established and now oversees one of the busiest ALS programs in the Veterans Health Administration. In addition to her local responsibilities, she serves as the national Associate Director of Neurology for ALS to provide oversight for the ALS System of Care, as well as establish and monitor adherence to national standards of care for Veterans with ALS.
Dr. Howard practices at the VA Puget Sound in Seattle, Washington and is an Associate Professor of Rehabilitation Medicine at the University of Washington. In addition to educating PM&R residents, she is a fellowship director for the VA’s first Chief Resident in Quality and Safety for rehabilitation medicine. She has received local and national clinical excellence awards by the Paralyzed Veterans of America in recognition of her work to advance the care of Veterans with ALS. She is currently an invited committee member for the National Academies of Science, Engineering and Medicine workgroup tasked with creating recommendations to improve ALS treatment, care, services, and supports. She has numerous publications and national presentations on the rehabilitative management of ALS.
Disclosure: Ileana Howard has the following financial relationship or relationship affiliations to disclose: She is employed by VA Puget Sound in Seattle and receives a salary. She has no relevant non-financial relationships to disclose.
Laura Mellon, MS, CCC-SLP, ATP
Laura Mellon is a staff speech-language pathologist at the VA Puget Sound Healthcare System in Seattle. She is a founder of the interdisciplinary Assistive Technology team and is certified as an Assistive Technology Professional. She works across the continuum of care, with a large portion of her caseload coming from her work as the SLP representative to the interdisciplinary rehabilitation outpatient clinics including Assistive Technology team and the ALS team which is certified as a Center of Excellence. In addition to her work at VA, Laura teaches the adult / acquired portion of the master’s level Augmentative and Alternative Communication course at the University of Washington.
Disclosure: Laura Mellon has the following financial relationship or relationship affiliations to disclose: She is employed by VA Puget Sound Healthcare System and receives a salary. She has no relevant non-financial relationships to disclose.
Susie Ryan-Coy, MSW, LICSW
Susie Ryan-Coy is a Clinical Social Worker currently working at VA Puget Sound as a Senior Social Worker. She is the daughter of a registered nurse and a retired firefighter (after 40 years of service). She was drawn to Medical Social Work when her beloved grandmother transitioned to hospice following an advanced pancreatic cancer diagnosis. Susie provided bedside care to her grandmother, alongside her mother, father, and extended family. Witnessing the process of death and dying, specifically in the home, interested Susie and led her to obtaining her Master of Social Work degree in 2014. As a student, Susie trained in multiple settings: inpatient, outpatient, and in the Renal Dialysis Unit at VA Puget Sound. Her interest continued to be focused on life limiting diagnosis and she transitioned to working with patients living with ALS in 2018. She has worked at two ALS Center of Excellence Clinics in Washington. Her interests continue to be advance care planning, death and dying, aging in place, and intensive case management. In her free time, she enjoys being with her husband and 2 small boys.
Disclosure: Susie Ryan-Coy has the following financial relationship or relationship affiliations to disclose: She is employed by VA Puget Sound and receives a salary. She has no relevant non-financial relationships to disclose.
Sarah Luhring Kiefer, MA, CCC-SLP, ATP
Sarah Luhring Kiefer completed her clinical fellowship in speech-language pathology at the Durham VA and has been an SLP at the Cincinnati VA for the past 16 years. Her primary role is to serve Veterans with neurogenic communication and swallowing disorders, as well as those with assistive technology needs. She is the coordinator of the Cincinnati VA Medical Center Interdisciplinary ALS clinic and serves as faculty for CVAMC’s Occupational Therapy Residency program in Assistive Technology. She is involved in multiple VA national quality improvement programs regarding Parkinson Disease, Multiple Sclerosis, and ALS particularly with regard to telehealth services and outreach to rural Veterans. She is also engaged in graduate and fellow education and was recently named 2024 Outstanding Clinical Instructor by the University of Cincinnati and is the recipient of the UC College of Allied Health Sciences and Warren Bennis Leadership Institute Award.
Disclosure: Sarah Luhring Kiefer has the following financial relationship or relationship affiliations to disclose: She is employed by Cincinnati VA Medical Center and receives a salary. She has no relevant non-financial relationships to disclose.
LaToya Davis, RN, BSN, MSN, APRN, FNP-BC
LaToya Davis has 18 years of Critical Care Nursing experience, 3 years of nursing administration experience and has worked for 7 years as a Spinal Cord Injury and Disorders Nurse Practitioner. She has collectively worked at VAMC for a total of 14 years, and she also has an extensive background in Home Health and Community Health. She believes working in these specialty areas provides her with the tools required to facilitate patient flow and create an environment that is conducive to learning for new healthcare staff and herself. Ms. Davis is well rounded in the nursing spectrum, has robust knowledge and skills, and is always willing to help others learn. She has completed the Cincinnati VAMC’s Leadership Program under the mentorship of Dr. Oden and completed her certification as a Family Nurse Practitioner under the NNEI Scholarship Program in June of 2014. Since October 2017, she has been working as a Nurse Practitioner in the Spinal Cord Injury and Disorders Clinic, with a focus in primary care, and spinal cord injury disorders such as Multiple Sclerosis, ALS, and traumatic spinal cord injury. She is invested in continuing education, by attending seminars for nursing practice both within and outside the VA.
Disclosure: LaToya Davis has the following financial relationship or relationship affiliations to disclose: She is employed by Cincinnati VA Medical Center and receives a salary. She has no relevant non-financial relationships to disclose.
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