Respect for Autonomy in ALS: Decision-Support, Communication, and Justice as Enabling Conditions

Respect for Autonomy in ALS: Decision-Support, Communication, and Justice as Enabling Conditions

This article analyzes the principle of respect for autonomy, often treated as central within the four-principles framework in contemporary bioethics. Rather than reaffirming autonomy as a slogan, I clarify its conceptual content and practical limits by identifying the conditions under which a choice is genuinely autonomous—especially understanding, voluntariness, and freedom from undue influence—and by explaining when clinicians may be permitted or required to intervene to prevent coercion or to support decision-making. I then apply these criteria to patients with intractable diseases, focusing on ALS, where progressive disability and dependence can make autonomous decisions difficult to express, reaffirm, and sustain over time. I argue that autonomy-respecting care in ALS requires more than non-interference: it demands capacity-sensitive consent practices, communication assistance, and deliberative responses to requests to die that address remediable suffering, isolation, and social pressure without collapsing into unreflective paternalism. Finally, I contend that justice is best understood as an enabling condition for meaningful autonomy. Without equitable access to information, assistive technologies, home-care support, respite services, and protection against stigma and discrimination,“respect for autonomy”risks becoming merely formal rather than substantively responsive to patients’values and vulnerability.