An article in today’s New York Times http://nyti.ms/1yF5WRr quotes me in a somewhat ambiguous way. The topic is how to avoid a prolonged death from dementia, when “there’s no plug to pull.” The article focuses on people whose advance directives call for VSED when they are demented. In other words, once they meet certain criteria such as not recognizing family members, don’t offer them food or drink. But that’s pretty hard to envision. Typically, the person would be hungry and interested in food, and would no longer remember why she had asked not to be fed. Who could refuse food to someone under those circumstances? And would the term “voluntary” even apply?
Paul Menzel and others take a more conservative approach, advocating for VSED when the person is in the final, most severe stage of dementia, including not being able to walk, speak, or feed herself. In my opinion, that’s far too late. When people speak about why they don’t want a prolonged death from dementia, they usually talk about loss of dignity, burden to family members, having some control over the narrative arc of their life and of how they are remembered, and so on. By the time you are in severe dementia, you have probably lost those things a long time ago. (The average span between diagnosis and death from Alzheimer’s is eight years.)
I remain convinced that once you are in even the early stages of dementia, it is too late to take action. That’s why I argue for pre-emptive suicide. I am hoping that the new biomarkers that seek to define your risk for Alzheimer’s before you become symptomatic, can help people who think like I do to “get out while the getting’s good.”
I am adding some of my academic work on this topic, for anyone who is interested–academic but still readable, I promise: