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Abstract Details

Clinical utility and feasibility of an ALS specific advance care directive: A retrospective chart review
Neuromuscular and Clinical Neurophysiology (EMG)
P3 - Poster Session 3 (5:30 PM-6:30 PM)
11-001
To determine the feasibility and utility of an ALS specific advance care directive.

ALS patients have complex needs throughout their disease trajectory especially as they approach end of life (EOL).  Advance care planning (ACP) aims to provide structure to the conversations and decisions around EOL care through documents such as an advance care directive. Previous studies have focused on template advance care directives that attempt to elucidate values and wishes regarding generic and abstract EOL scenarios. A disease specific advance care directive has been proposed as a solution. The implementation of an ALS specific advance directive (ALS-AD) has yet to be researched thoroughly.

 

 

 
In this retrospective, chart review study newly diagnosed ALS patients at an ALS Center of Excellence from 2015-2018 were analyzed. Feasibility was assessed by evaluating the percentage of patients with completed ACP documents as well as the time interval needed to complete the document.  Utility was measured by comparing the patient's ALS-AD responses (ventilation/gastronomy preference and code status) to what actually occurred clinically.
There were 110 patients that were included in our analysis (53% male, mean age 64.2 years, 74% riluzole, 12% edaravone, 33% bulbar).  A total ACP documentation completion rate of 69% was observed, which includes Provider Order for Life Sustaining Treatment (POLST) forms (55%), advance care directives (52%), and 34% completed both.  Time from diagnosis to completion of a POLST or advance care directive was 305 and 258 days respectively.  In the patients that completed the ALS-AD, 100% (n = 19) of patients were honored in their code status preference, 100% (n = 14) were honored in their invasive ventilation preference, and 100% (n = 25) were honored in their gastrostomy preference.

The use of an ALS specific advance care directive is feasible and promotes goal-concordant care when implemented in an ALS center of excellence.
Authors/Disclosures
Tyra Swanson
PRESENTER 		Miss Swanson has nothing to disclose.
Kendall Nichols, MD (University of Minnesota) Dr. Nichols has nothing to disclose.
Samuel J. Maiser, MD (Hennepin Healthcare) Dr. Maiser has nothing to disclose.