ALS Qualitative Study Highlights Complexities of Decision-Making Process for Medical Aid in Dying (MAID)

Findings from a new qualitative study, presented at the 44th National Society of Genetic Counselors (NSGC) Annual Conference, held November 6-10, 2025, in Seattle, Washington, revealed how patients with amyotrophic lateral sclerosis (ALS) navigate the medical aid in dying (MAID) process, with responses reflecting a mix of autonomy, faith, fear, and systemic barriers that influence their end-of-life choices.¹

Researchers recruited 13 adults diagnosed with ALS in the United States from the Northeast ALS Consortium, ALS-related Facebook groups, and ALS support groups, who either were either considering or pursuing MAID. Participants completed an 11-item Qualtrics demographics survey and participated in semi-structured Zoom interviews, which averaged 22.2 minutes in duration (range, 10.6–42.2 minutes) and were conducted between December 17, 2024, and January 7, 2025.

Presented by lead author Lindsey Young, MS, CGC, Genetic Counseling Intern at Kaiser Permanente Hawaii, interview questions explored participants’ experiences seeking MAID, associated challenges, psychosocial impacts, and decision-making processes. All transcripts were verified, de-identified, and analyzed using a mixed deductive and inductive narrative coding approach. From the transcribed interviews, 5 themes emerged including autonomy and control, intrinsic beliefs, quality of life, access and systemic barriers, and logistics of care.

One participant shared, “The biggest thing I’ve experienced with ALS is the loss of control. Day by day I’m losing control. But choosing my death through MAID I gain back the control, which is so important.” Another participant said, “I’m scared to get to the point of ALS where you cannot even communicate. Think about that […] you can't move anything.” One other response was, “As a Christian, making the decision to end my life goes against my faith... but at a certain stage, I thought that God could understand what I'm going through and why I have to make the decision.”

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Participants frequently balanced personal preferences with family and religious values when considering MAID, and some reported that self-administration requirements pressured them to make decisions earlier than desired. Authors noted that limited institutional guidance led patients to seek information regarding eligibility, insurance, and referrals outside the clinic, and that the timing of MAID discussions by clinicians varied widely. Furthermore, access was strongly influenced by geographic location, and despite its potential to support values of clarification and coordinated care, researchers noted that genetic counseling was rarely utilized in this context.

Based on these findings, authors suggested that health systems could implement standardized workflows for MAID and develop patient-facing guides that clearly outline eligibility criteria, procedural steps, relevant contacts, and legal and insurance considerations. In addition, they noted that interdisciplinary teams may benefit from practical training, defined referral triggers, and the use of a designated navigator to coordinate care across specialties.

Researchers also stressed that establishing clear timing cues for introducing MAID, such as at diagnosis or at defined disease progression milestones, could reduce confusion, delays, and distress. Moreover, the authors recommended that policymakers evaluate ALS-specific flexibility in self-administration requirements and assess the potential applicability of these approaches in other progressive conditions to improve equity and patient outcomes.

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REFERENCE
1. Young L, Garcia K, Jones T, Chuldzyhan M. From Diagnosis to Decision: A Nationwide Qualitative Study on People with ALS’ Experiences with Medical Aid in Dying. Presented at: 2025 NSGC Annual Conference; November 6-10; Seattle, Washington.