A ‘Good’ Death with Dementia: An Autoethnographic Exploration of Voluntary Stopping Eating and Drinking (VSED)

Abstract

Voluntary stopping eating and drinking (VSED) has become increasingly recognized as a legal, appropriate, and ethical way to hasten death at the end-of-life. It is one of few options available for people with dementia to hasten their death. My Dad wanted to use VSED after he was diagnosed with dementia; because there is little information about how and when VSED is being used as an end-of- life option for people with dementia, our family was mostly on our own to identify resources to help him realize this choice. The purpose of this thesis is to address this gap using a mix of autoethnography and in-depth interviews with VSED experts in Washington State and the Netherlands, using a narrative format that contextualizes personal experiences into larger social conversations. I explore the question of what is a ‘good’ death and what options an individual with dementia has to hasten his/her death with VSED. My analysis looks at how to prepare for VSED; how to know when to begin; the process itself; the role of the caregiver; and a cross-cultural look for other options. The observations and discussion from this research indicate that VSED deserves ethical and legal clarity and that individuals with early-stage dementia need better options to voluntarily hasten their death while they still have the capacity to do so.