Date of Award

10-16-2023

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Philosophy

First Advisor

Jennifer Parks

Abstract

The COVID-19 pandemic subjected millions of Americans to alienated deaths in institutional settings. Given that the default response to health crises is to go to the Emergency Department, isolation protocol limited the care and support ill and potentially dying people could receive at the bedside. Crisis standards of care also cut off meaningful discussions of end of life care preferences. Communication barriers regarding end of life care existed well before the pandemic, however. This dissertation proposes a new approach to the concept of Advance Care Planning (ACP), or the process of deciding what kinds of care one would prefer in a crisis or at the end of one’s life. Herein, I argue that certifying direct care workers (DCWs) to conduct ACP would expand access to this vital service, simultaneously providing these often marginalized workers with enhanced professional recognition and compensation. Historically, doctors and nurse practitioners have been the primary professionals who could be compensated for practicing ACP, and both groups cite lack of time and preparation as reasons they avoid it. More recently ACP has garnered more attention due to the pandemic, but contemporary approaches have yet to invoke a relational configuration which will lead to it’s success. I draw from Kathryn Abrams theory of agency to argue that training DCWs to conduct ACP would enhance not just their agency, but also the agency of chronically ill and older adults. The identities of both groups are deserving of what Hilde Lindemann refers to as narrative repair. Finally, I draw from Eva Kittay’s theory of connection based equality to argue that my approach to ACP would allow DCWs to better meet their own needs and contribute to more just and equitable dependency relationships throughout society.

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