Date of Conferral

8-22-2024

Date of Award

August 2024

Degree

Ph.D.

School

Public Policy and Administration

Advisor

Lori Salgado

Abstract

While numerous studies have explored various aspects of end-of-life care, a significant gap persists in the literature regarding the emotional burden experienced by informal caregivers as they grapple with challenging decisions. Additionally, with current federal and state guidelines, administrators do not have clear policies to drive equity for patients and their informal caregivers. This qualitative study examined informal caregivers’ perceptions of how end-of-life care policies impacted the dying process and how education influenced their grief and guilt. Using a conceptual framework of Simon’s concept of bounded rationality and evidence-based policymaking, the study addressed constraints on caregivers’ decision-making due to limited information, cognitive overload, and emotional stress. Data were collected through online surveys from 18 informal caregivers in the United States, exploring their experiences of grief and guilt and their recommendations to guide policy change for education on end-of-life care. Thematic analysis of survey transcripts revealed four themes: challenges with accessing and timeliness of support resources, psychological impact and enduring guilt, information and decision-making constraints, and hastening death? morphine-related guilt. Caregivers described facing significant emotional burdens, including guilt and grief, compounded by cognitive constraints, such as concerns about morphine in palliative care, fearing it might hasten death. This study advocates for positive social change through policies that improve support and resources for informal caregivers and highlights the necessity for educational initiatives to enhance caregivers’ decision-making and emotional management within their cognitive limits.

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