Of the estimated 16 million U.S. family members currently providing essential yet unpaid caregiving for persons with dementia (PWD), many will also make end-of-life (EOL) care decisions as surrogates, a process that can be fraught with uncertainty. Even with dementia death rates rising, many families delay advanced care planning (ACP) discussions, and surrogate decision makers often lack crucial information and support, implicating the need to further study this topic in aging. While decision aids (DA) serve as a support tool for caregivers, they can be less effective when failing to address unresolved decisional needs. Utilizing the Ottawa Decision Support Framework (ODSF), which asserts caregiver decision needs affect decision quality, this study sought to identify surrogate decision-support needs extending beyond general ACP. This mixed study used cognitive interviews and focus groups with family caregivers (N=13) and healthcare professionals (n=14) to assess their knowledge and understanding of hospice and artificial hydration and nutrition. Data were audio-recorded, transcribed verbatim, and analyzed with thematic content analysis. Three main themes were identified: DAs alone aren’t enough to foster quality decision making for surrogates; individualized communication is necessary to clarify PWD and caregiver value priorities and disease trajectories; and clarification of the impact of care choices within situational contexts is quintessential. Further development is needed to create a practice protocol from these themes to inform professionals assisting surrogates in ACP at EOL. Practical implications from this study include highlighting the importance of individualized communication between PWD, providers, and caregivers in addressing EOL care decisional needs.
Family caregivers often make key end-of-life care decisions for their relatives. For those caring for persons with dementia (PWDs), a third of older decedents, making end-of-life decisions as a surrogate is especially challenging. Notably, few evidence-based interventions exist to support caregivers in this capacity. Guided by the Ottawa Decision Support Framework which recognizes three determinants of informed decisions - information, value clarity, and support, the current study identifies key value considerations and information needs among family caregivers as they weigh decisions regarding hospice enrollment and artificial nutrition and hydration (AHN) for PWDs. One focus group (n=7) and four individual interviews (n=4) were conducted with dementia family caregivers. All face-to-face and telephone interviews were audio-recorded, transcribed verbatim, and verified for accuracy. Thematic analysis (Braun & Clarke, 2006) was conducted to identify and organize themes. Two main themes and subthemes emerged: 1. Caregivers expressed hospice-related values including having enough knowledge about hospice treatments for both Alzheimer’s and new symptoms, having caregiver support services, considering family needs, and weighing the extent the PWD can engage with others meaningfully and remain at home. 2. Caregivers shared AHN-related values including clearly understanding AHN treatments, services and risks for the PWD considering the patient’s functional status. Participants’ information needs reflected their priority of practical needs being met. These findings offer implications for how to design decision support tools and interventions that provide practical and specific information on the benefits and risks of hospice and AHN for PWDs and caregivers.
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.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.