Objective:

This research study aims to investigate which treatments are used and what advanced care planning decisions are made by patients with ALS at our institution. 

Background:

Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that results in muscle weakness and has a median life expectancy of 3-5 years. The treatments currently available focus on managing symptoms and improving quality of life. Common ALS medications such as riluzole and edavarone can slow progression of symptoms. With the progressive nature of ALS, advanced care planning is essential to ensure patients’ medical wishes are respected.

Design/Methods:

Retrospective review of patients seen at our ALS Multidisciplinary Clinic between July 2022 and June 2024.

Results:

Preliminary results indicate that riluzole is the most used medication among ALS patients at our institution, which is consistent with the general population. Thirty percent of patients were on no medications, with the main reason for discontinuation of medication being adverse effects. With advanced care planning, the Physician Orders for Life Sustaining Treatment Form had the best outcomes with discussion of the forms by 80% of patients and completion by 50%. However, results show that for many patients, there was incomplete or no discussion of other advanced care planning such as Medical Power of Attorney and Out of Hospital Do Not Resuscitate forms. 

Conclusions:

These data reveal a gap in advance care planning, which is essential to address going forward with this patient population. Future steps could include analyzing the impact of ALS medications versus no medication on patients' quality of life. Additionally, investigating long-term outcomes of advanced care planning on patients’ quality of life could continue this research forward.