Background: Amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disorder resulting in functional decline and death. Despite recent emphases on advance care planning (ACP), low rates of documentation of ACP are seen in this population. Objectives: This study aims to determine rates of advance directive (AD) documentation and whether having a documented AD or ACP discussion affects healthcare utilization for ALS patients. Design: Retrospective chart review. Setting/Subjects: 130 patients from a multidisciplinary clinic at one U.S. tertiary care medical center. Measurements: The presence of a completed AD uploaded to the electronic medical record; the documentation of ACP discussions; and rates of percutaneous endoscopic gastrostomy (PEG) placement, tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice utilization. Results: Overall rates of AD documentation in the electronic medical record were low at only 29.2%. Rates of PEG placement, tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice utilization did not vary between patients with and without AD documentation. However, patients with a documented ACP conversation were more likely to have a PEG placed and to utilize hospice. Conclusions: Our study indicates that while having a documented AD is not correlated to differences in healthcare utilization in patients with ALS, the benefit of ACP in this population is in having a dedicated conversation with patients and caregivers rather than focusing on completion of a static document.
Keywords: advance care planning; amyotrophic lateral sclerosis; healthcare utilization.