There was a time when it was nearly impossible to tell who would develop degenerative brain diseases like Alzheimer’s, which impact memory and personal relationships. Now, we understand more of the genetic and lifestyle factors underpinning the disease, but even this new knowledge brings up new and challenging questions: If you were told you had one of these biomarkers, would that change how you planned for the future? A new study in JAMA Neurology shows that for many people, the answer is yes.
Over the course of two years, Emily Largent, Ph.D., an assistant professor of medical ethics and health policy at the University of Pennsylvania, has been interviewing patients who received news to this effect. She spoke to 47 patients who were told that their brains produce high levels of amyloid-β — plaques in the brain that increase a person’s risk for cognitive decline — but had yet to experience the effects, asking whether they would be interested in investigating physician-assisted death if they became severely cognitively impaired. She describes her findings in the new paper.
Largent tells Inverse that one in five of the patients she interviewed said that they would be interested in investigating physician-assisted death if they developed dementia rather than allowing the disease to progress.
“It was interesting to us that people were spontaneously bringing up that they were interested in or considering aid in dying,” Largent says. “It led to very rich insights. People had a lot to say about it.”
“Death With Dignity” Acts
Right now, dementia patients aren’t eligible for “death with dignity” laws that allow terminally ill patients to receive lethal doses of medications. There are six US states that currently allow terminally ill patients to choose to end their lives: Colorado, Hawaii, Oregon, Vermont, Washington, and Montana (Washington, D.C. does too, and New Jersey’s law will soon take effect). The law applies to patients who meet two qualifications: They have six months or less to live, and they are declared mentally competent when they ask for a prescription to die.
Importantly, very few people use this option. In Oregon, where a “death with dignity act” was passed in 1997, a 2018 report showed that 249 people were given lethal prescriptions — and only 168 used them. 91.7 percent chose physician-assisted death because of a loss of autonomy, 90.5 chose it because of “decreasing ability to participate in activities that made life enjoyable,” and 66.7 percent cited that they felt they would lose their dignity. Largent wanted to find out what factors were involved in a person’s changing attitude to physician-assisted death.