Dena Davis – renowned author, teacher and researcher – recently took time from her schedule to be interviewed for this blog and the Final Exit Network (FEN) magazine.
After earning her Ph.D. in Religion from the University of Iowa in 1986, Professor Davis went on to receive her J.D. from the University of Virginia School of Law in 1990. At this point in her robust career, she’s now teaching bioethics to undergraduates.
This educational combination makes her well-positioned to discuss the legal and ethical issues surrounding advance directives and dementia. And her interests are not solely academic: For more than 10 years, she watched her mother progress through dementia. As a self-described “autonomy freak,” Professor Davis places high value on total independence, as did her mother. This intensified the frustration of the impossibility of intervening on behalf of her mother’s inevitable decline.
She decried the “many societal forces against self-determination,” observing that “it’s really sad that so many people are afraid to share their concerns with their primary care provider, for fear that they may be forced to undergo a psych evaluation.”
Professor Davis referred to the difficulty of using advanced directives to end a life with dementia as a “catch-22.” Referencing a forthcoming book, Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death (editors include Dr. Timothy Quill and Thaddeus Pope), she finds VSED not very helpful for dementia.
When asked about FEN’s Supplemental Advance Directive for Dementia Care (SADD), she emphasized the importance of ending one’s life well before one reaches that point. But how do you know when that point is? She cited an explosion of research into biomarkers, various biological evidence that one has Alzheimer’s.
It is now believed that one may have Alzheimer’s as much as 20 years before the onset of clinical symptoms. Davis invoked various other works, including the PBS documentary The Suicide Tourist, about FEN Executive Director Mary Ewert and her husband traveling to Switzerland, and Knocking on Heaven’s Door: the Path to a Better Way of Death, Katy Butler’s compelling mix of personal narrative and investigative reporting about the broken medical system during her father’s final days.
Professor Davis thinks the Brittany Maynard case has made the issue come alive for her students, and suggested that while they might be protective of their grandparents, they are less likely to consider their own options.
Confronted with the well-publicized case involving a young, white, well-off woman with a loving family, they can more closely identify with the possible necessity of making the difficult decision to hasten their own death. Professor Davis cited the concept of moral distress, which occurs when one knows the ethically correct action to take, but feels powerless to take it.
Stressing that one may have to lose some good years, she used the shorthand phrase “five minutes to midnight,” explaining that most people (like Cinderella) want to wait until the last possible moment before they leave the party (until five to midnight) – but many feel that it may be too risky to leave it that long. In addition to cognitive decline, one might lose the ability to swallow or other physical capabilities.
Professor Davis’s ultimate position seems to be reminding folks facing an impending untenable situation: “You can’t count on other people, you have to have the guts to do it for yourself.”
A beautifully written, logical, succinct summary of cogent points; thanks, Jim.
I agree with Professor Davis, that an advanced directive for dementia is of little benefit. Not only is its execution hard to guarantee (“catch-22”), it entails abandoning autonomous active choice at the time of death, which to me is the core value driving self-determination at end of life.