Dena S. Davis is professor emerita at Cleveland-Marshall College of Law, and is now a professor at Lehigh University, where she teaches primarily courses in bioethics. She has been a visiting scholar at NIH, Arizona State University, The Hastings Center, and the Brocher Foundation. She has been a Fulbright Scholar in Israel, India, Indonesia, Italy, and Sweden. Her research partner for this project is Lauren Dennelly, a graduate student at Bryn Mawr.
What Would Americans Want, If They Were Diagnosed With Dementia
Advance directives in the US give only limited options to people facing a diagnosis of dementia. Existing options focus on choices involving the final stages of dementia, such as refusing feeding tubes when one can no longer swallow. Our question was: do these choices respond to the concerns of many Americans? I knew that I would want to end my life a whole lot earlier if I had dementia—before I needed diapers and had to live in a nursing home.
Lauren Dennelly and I sampled 1000 people over the age of 50, in two groups. Group One responded to a vignette about four people who experience fatal heart attacks at different stages of their life with dementia. Group Two imagined that they were directing a health care proxy about when to accept or refuse antibiotics for a fatal pneumonia, should they be in a state of dementia.
We discovered that 56% of Group One would prefer a life trajectory in which they had a fatal heart attack while still in the first stage of dementia. In Group Two, 20% would refuse antibiotics for a fatal pneumonia in the first stage, and 35% in the second stage, before they needed to move into some sort of care center.
Thus, we showed that end-of-life strategies that focus only on the final stages of dementia fail to reflect the concerns of a majority of Americans over 50.