Optimizing Patient Autonomy in Amyotrophic Lateral Sclerosis: Inclusive Decision-Making in Multidisciplinary Care

Abstract

and may impede the timing and quality of their decisions. Several interventions for ALS care, including nutrition, hydration and respiratory support, are contingent on well-timed implementation [5,6]. However, optimal timing of symptom management may be at odds with patients’ readiness to consider these complex interventions. Patients and families need time to come to terms with their changing situation before they can fully participate in decision-making. Reactions to the diagnosis can have an influence on patients’ willingness to engage with healthcare services [7] and their preferred role in decisionmaking. Desire for autonomy is an individual choice, reflecting patients’ attitudes to life, personal circumstances and healthcare experiences [7]. Patients and families are confronted by escalating degeneration and loss, over which they have no control. Autonomy over choices of symptom management and quality of life may become a way for patients to exert control over their continually changing situation [8]. Three aspects of ALS service delivery have been found to facilitate patient autonomy in decision-making: access to specialized ALS multidisciplinary care [7];