Decision-Support Needs of Caregivers Considering Hospice Enrollment for a Family Member With Dementia

Abstract

Background: There are few evidence-based interventions to support the growing number of family caregivers of persons living with advanced dementias (PWADs) in surrogate decision-making roles. This study identifies needs for decision support among family caregivers considering hospice enrollment for PWADs, in order to better inform efforts for decision support. Method: Individual and focus group interviews were conducted with caregivers (n = 13) and healthcare professionals (n = 14). Directed content analysis was used to identify and organize themes that emerged from interview transcripts. Results: Analysis revealed 2 themes concerning PWAD caregivers’ hospice-related decision-support needs: (1) detailed and practical information about hospice and (2) discussions clarifying meaning around quality of life (QOL) for PWADs. Caregivers needed to know when they should consider hospice, what treatments would be stopped, what services would help caregivers, and what costs would be involved. Caregivers varied in their perceptions of what it might mean for a PWAD to have QOL at the end of life and whether or not hospice would enhance it. Discussion: This study’s findings underscore the importance of decision-support tools and patient- and family-centered education for PWADs and caregivers about the trajectory of dementia and end-stage symptoms, along with practical information for hospice care planning and discussions addressing end of life values.