Reconstructing Values and Political Preferences: The Family Caregiver Role in the Decision-Making Process of Those Afflicted by Acquired Brain Injury

Abstract

As societies are ageing, the role of informal family caregiving is becoming increasingly crucial to the sustainability of long-term healthcare systems. Nonetheless, this vital role is typically undervalued. Similarly, the associated task of supported decision-making, which fall under the umbrella of caregiving, is often overlooked. This paper will report on a specific subset of family caregivers who care for a family member with acquired brain injury (ABI) - more commonly known as stroke survivors. These care recipients often suffer from impaired cognitive capacity and are thus in need of guidance in decision-making. The primary purpose of this research is to determine the ethical justification of the supported decision-making process of voting. Despite the need for assistance, this research will demonstrate that ABI-individuals should be included in the voting process. However, due to impaired ability to communicate, think, and learn, others may often be too quick to dismiss their decision-making capacity or discredit their judgment. Therefore, the goal of this thesis is to serve as ethical guidance on how the family caregiver should approach the supported decision-making process of voting and how to reconstruct values and political preferences to reach a shared and informed political decision. My research reflects a relational approach to supported decision-making and will illustrate that the family caregiver has an ethical responsibility to engage with the care recipient by not only incorporating and acting upon pre-stroke values, but also including post-stroke values to ensure that their voice is adequately represented in the political decision. In particular, this thesis argues that the caregiver should follow the moral criteria of placing the emphasis on respecting the dignity of the current self, instead of solely focusing on the autonomous person who one was prior to the affliction of brain damage. In doing so, post-stroke values should be included in the supported voting process.