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.

Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study

“…The positive feedback on the decision aid compliments previous work with decision aids that has demonstrated positive effects in improving expectations for the future and increasing knowledge [ 13 , 14 ], and the on‐going call for the development of decision support tools to help this population [ 31 ]. This is particularly important as many families are often unaware of what may happen in the later stages of dementia or find that engaging in discussions about the later stages can be difficult.…”

“…However, it is not simply a lack of information that makes decision making complex and difficult. As participants discussed, some decisions can feel overwhelming and previous studies have demonstrated decisions can be emotionally challenging [ 31 ]. Making decisions about end of life care can lead to feelings of guilt, which directly influences the decisions that are made [ 32 ].…”