“People Just Don’t Understand”: Challenges Communicating Home Hospice Volunteer Role Experiences to Organizational Outsiders

Abstract

Volunteers play a central part in the delivery of end-of-life care. Unlike other interdisciplinary team members, however, home hospice volunteers may face unique communication challenges when explaining their role to organizational outsiders. In-depth, semistructured interviews were conducted with 38 home hospice volunteers from nine different U.S. hospice organizations. Interviews revealed volunteers experience four communication challenges when trying to explain their role to outsiders: we’re not special—we’re special, we’re among the living—we’re among the dying, it’s enjoyable—it’s depressing, and presence is significant—presence is insignificant. Findings demonstrate how role articulation inhibits volunteers from communicating the full scope and relevance of role experiences. Although volunteers used discursive strategies to alter perceptions of stigma, these strategies may also exaggerate insider–outsider differences, inhibit authentic role disclosure, and reduce value of service to personal benefit. Our conclusions highlight the importance of external-based communication training to enhance role identity and connection to the hospice mission.