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.
"People had a lot to say about it."
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.
In her paper, Largent notes that many people with biomarkers for Alzheimer’s are also “particularly motivated by loss of autonomy.” For example, one patient told Largent the following:
“I don’t intend to end up the way my mother did. She knew something was wrong, initially, and it just got very, very … I mean, she was a very unhappy woman. I just don’t want to live in a nursing home in a locked ward, that’s all.”
Right now, Alzheimer’s patients can voluntarily stop eating and drinking to hasten their own death, but they are not allowed to administer life-ending medications, even if they end up with terminal conditions. “It may be possible to say that they have six months left to live,” Largent says, but because of the patients’ diminished cognitive abilities, they can’t independently ask for the intervention. “They’re not eligible.”
The question is whether patients facing cognitive decline should also be allowed to request aid in dying, as opposed to the removal of care that would allow them to continue living.
“We’re giving people means of shaping this. We’re thinking that people, when they have advanced capacity, could make determinations about whether they want aid in dying,” Largent says.
The Acceptability of Aid in Dying
Largent’s study is small, and overall, she found that the vast majority of Alzheimer’s patients wouldn’t consider aid in dying. But crucially, she says that the small number of patients with the brain disease who consider the option is roughly equivalent to the amount of terminally ill patients with other conditions who consider it too. That, she says, suggests it’s on people’s radar, even though the law doesn’t allow it.
"We found that about 20 percent of people who had this elevated biomarker would be interested in aid in dying."
“We found that about 20 percent of people who had this elevated biomarker would be interested in aid in dying, and that’s pretty consistent with other studies on people who have received terminal diagnosis,” says Largent.
Still, there are concerns that allowing patients with Alzheimer’s to choose physician-assisted death would increase stigma surrounding the condition, or even impact the quest for lasting treatments. Importantly, some patients go on to live happy lives with the condition, as one patient who opposed physician-assisted death for Alzheimer’s patients told Largent:
“My mother now, who has very severe symptoms of Alzheimer’s, is still having fun. She’s in this place, she loves this place…Ultimately, it’s not a horrible way to go.
But for those who are sure about how they would like to proceed when faced with a brain disease, the options are limited, adds Largent. Though she adds that attitudes may be changing.
“The public acceptability of aid in dying is at an all time high, and I’m interested to see if that results in more legislation that looks the same across more states,” says Largent.
A 2018 Gallup poll found that 72 percent of Americans believed that a doctor should be allowed to end a patient’s life if a patients requests it and if they have a terminal, incurable disease of the body. The question is whether public opinion will change enough to allow inclusions of brain diseases like Alzheimer’s in this category.
Largent’s data seem to suggest that the idea is at least circulating.
“There’s an open and ongoing debate,” she says. “I’m excited to see where it goes next as we get input for more stakeholders.”
Summary: Seven states have legalized physician-assisted death (PAD) for competent, terminally ill individuals; these criteria exclude persons with dementia (PWD). However, there is ethical and policy discussion around expanding access to PAD to people with Alzheimer disease (AD). Here, we present attitudes toward PAD of cognitively normal individuals enrolled in a clinical trial that required them to learn whether they have elevated amyloid-β, a biomarker that increases risk for cognitive decline owing to AD.