Characteristics and Motivations of People With Amyotrophic Lateral Sclerosis Who Pursue Medical Aid in Dying in California.

Abstract

Background and objectives: People with amyotrophic lateral sclerosis (ALS) disproportionately pursue medical aid in dying (MAID). We described characteristics and motivations of patients with ALS who sought MAID in California.

Methods: This is a retrospective cohort study of patients followed in the ALS and Palliative Care clinics at the University of California, San Francisco, between September 2017 and October 2023 who obtained a MAID prescription under California's End of Life Option Act. We abstracted demographic and clinical information from the electronic health record. We reviewed clinician notes to gather salient themes regarding patients' motivations for MAID and calculated the frequencies of motivations reported by prescribing physicians on standardized forms.

Results: Thirty-seven patients obtained a MAID prescription. The median age at first documented inquiry about MAID was 64.0 years, 51.4% identified as women, 83.8% were White, and 10.8% had Medicaid. All spoke English and had a care partner. Most (70.3%) had limb-onset ALS. The median ALS Functional Rating Scale-Revised score was 28.5/48 and the median forced vital capacity was 41.5% at time of first inquiry about MAID. Most patients (70.3%) inquired about MAID during their first visit with palliative care. Physicians wrote MAID prescriptions at a median of 76 days after first inquiry. Most patients (73.0%) took MAID medications to end their lives, at a median of 39.5 days after the prescription was written.Clinician notes revealed that patients were commonly motivated to pursue MAID by concerns about current and future suffering, loss of autonomy and enjoyable activities, and desire for control at the end of life. On standardized forms completed after patients died, physicians documented that "persistent and uncontrollable pain and suffering" was a less common reason that patients pursued MAID.

Discussion: Patients with ALS who requested MAID were largely White and English speaking. Most patients inquired about MAID when they had moderate-stage ALS and were early in their course of palliative care. Motivations for pursuing MAID often involved the accumulated losses characterizing ALS and worries about the future. Future studies should incorporate diverse patient voices, explore barriers to accessing MAID, and consider whether any interventions can ameliorate issues driving requests for MAID in people with ALS.