Advance Care Planning Among Patients With Amyotrophic Lateral Sclerosis: Patient Perspectives on Goals of Care Conversations

Introduction Little is known regarding circumstances surrounding advanced care planning (ACP) for patients with amyotrophic lateral sclerosis (ALS). We aim to describe preferences, and perspectives surrounding ACP in patients with ALS. Methods We conducted a survey of patients with ALS. Survey questions were related to advance directive completion and ACP discussions regarding end-of-life (EoL) choices. Results 49 surveys were included. Patients have given thought to advance directives, goals of care, and EoL treatments within months of diagnosis (Median: 1 month; IQR: .6 – 3 months). Twenty-seven opened dialogue with spouses, 24 with family members, 19 with health professionals and 16 with their lawyer. Eighty percent were comfortable discussing advance directives and power of attorney while fewer (70%) are less comfortable regarding specific aspects of care such as CPR or invasive ventilation. Only one barrier to discussion was identified with one patient reporting they did not wish to talk about the topic. There was no significant correlation between timing of diagnosis and whether an EoL discussion had occurred (τ b = .23, P = .14: n = 42). Level of feeling informed was significantly associated with making EoL decisions for CPR, legal arrangements for a decision maker and completion of living will or AD. Conclusion In this small cohort, a substantial proportion of ALS patients initiated EoL conversations early. When feeling informed, patients were more likely to make specific EoL choices. Findings suggest an opportunity for providers to help facilitate conversations, ensuring patient wishes.