Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease

Abstract

The literature shows that adolescents and young adults (AYAs) living with neuromuscular disease want to have discussions about goals of care and want them sooner. Conversations about goals of care and advance directives are not common practice in the neuromuscular clinic setting. This nurse practitioner–led project used a conversation tool as a 1-time intervention to guide conversations about participants' goals and wishes, comparing the number of participants with advance directives before and after the use of the intervention, and their satisfaction with having had a conversation about goals of care using this tool was measured. A total of 14 AYAs with genetically confirmed neuromuscular disease were enrolled in this project. There was a 92.9% increase in the number of AYAs with an advance directive demonstrating clinical meaningfulness. Most project participants were either quite a bit satisfied (21.4%) or very much satisfied (57.1%) with having used the intervention to discuss goals of care. This quality improvement project demonstrated that, if asked, AYAs with neuromuscular disease willingly agreed to discuss their goals of care and found satisfaction in using the intervention to complete an advance directive. Advanced Practice Registered Nurses should consider systematic processes to include these discussions as a part of routine practice.