Lessons Learned From a Feasibility Study of Longitudinal Palliative Care for Patients With Amyotrophic Lateral Sclerosis

ABSTRACT Introduction/Aims The benefits of initial palliative care (PC) consultation for patients with amyotrophic lateral sclerosis (ALS) have been previously described. The aim of this study was to explore the evolution of PC needs of patients with ALS over time through analysis of PC follow‐up visits. Methods Patients followed at a multidisciplinary ALS clinic received PC consultations and follow‐ups between October 2020 and April 2022. All patients who received at least one PC follow‐up visit were included in this study. Physician documentation of the visits was analyzed for sub‐themes and topics. Topics discussed during visits and visit frequency were examined in the context of patient variables. Results The 26 patients had at least one PC follow‐up visit (range 1–12 visits). Topics of discussion varied by individual rather than disease status and were often discussed repeatedly. Compared to initial consultations, follow‐up visits featured more frequent discussion of sialorrhea and less frequent discussion of constipation, pain, and prognosis (all p < 0.05). Care coordination was discussed in 82% of follow‐ups. Time between follow‐up visits shortened as the disease progressed. Medical assistance in dying (MAID) was discussed by 31% of patients either at initial consultation or follow‐up. Discussion Each individual with ALS has unique PC needs. PC specialist resource planning should anticipate higher frequency visits for patients later in the disease course. Given the importance of care coordination and the scarcity of PC specialists, we recommend further study of effective models of care coordination. We recommend that PC specialists be comfortable counseling patients on MAID.