Managing in the Trenches of Consumer Care: The Challenges of Understanding and Initiating the Advance Care Planning Process

Abstract

To better understand how community-based long-term care providers define advance care planning and their role in the process, we conducted 8 focus groups with 62 care managers (social workers and registered nurses) providing care for Ohio's Medicaid waiver program. Care managers shared that most consumers had little understanding of advance care planning. The care managers defined it broadly, including legal documentation, social aspects, medical considerations, ongoing communication, and consumer education. Care managers saw their roles as information providers, healthcare team members, and educators/coaches. Better education, resources, and coordination are needed to ensure that consumer preferences are realized.

Keywords:

• qualitative methods
• end-of-life care/decisions
• long-term care
• advance care planning
• care management

Acknowledgments

This work was supported by an internal grant from the Northeast Ohio Medical University. The authors thank Kyle Allen, DO, and Steven Radwany, MD, from Summa Health System, Akron, OH, and Denise Ertle and Susan Sigmon from Area Agency on Aging 10B for their guidance in designing this study. The authors also thank their research fellow, Travis Thompson, and research assistant, Tiffany McCombs, for their assistance with transcribing the digital recordings.