About one in five cognitively normal older adults who had elevated beta-amyloid — a biomarker that increases risk of Alzheimer’s disease — said they would consider physician-assisted death if they experienced cognitive decline, a survey of A4 (Anti-Amyloid Treatment in Asymptomatic Alzheimer’s) trial participants showed.
Learning about amyloid status did not change personal beliefs about the acceptability of physician-assisted death, but individuals who were open to the idea at baseline said elevated amyloid and dementia risk would be relevant to their decision, reported Emily Largent, JD, PhD, RN, of the University of Pennsylvania in Philadelphia, and colleagues in JAMA Neurology.
Seven states have legalized physician-assisted death for people who are terminally ill and competent, but those criteria exclude people with dementia, Largent noted.
“Our research helps gauge interest in aid-in-dying among a population at risk for developing Alzheimer’s disease dementia and grappling with what they want the end of life to look like,” she told MedPage Today.
“Public support for aid-in-dying is growing,” Largent added. “Now, we are seeing debates about whether to expand access to aid-in-dying to new populations who aren’t eligible under current laws. That includes people with neurodegenerative diseases like Alzheimer’s disease.”
The survey results show an array of attitudes toward end-of-life decisions that mirrors what is found in other terminal conditions, observed Brian Draper, MBBS, MD, of the University of New South Wales in Sydney, Australia, who has studied suicide and euthanasia in older adults extensively.
“Most importantly, these attitudes were seemingly present at baseline and not altered by investigation results,” said Draper, who was not involved with this study. “While requiring replication in larger and more representative populations, this suggests that, in people who self-present due to concerns that they are at risk of Alzheimer’s disease, attitudes towards end-of-life planning have already been largely formed, so clinicians should consider assessing these attitudes in such patients as part of their initial workup,” he told MedPage Today.
In their study, Largent and co-authors surveyed cognitively normal older adults enrolled in the A4 Alzheimer’s prevention trial — which required them to learn whether they have elevated beta-amyloid — and a companion study known as LEARN (Longitudinal Evaluation of Amyloid Risk and Neurodegeneration). All A4 participants had elevated beta-amyloid and were part of an ongoing trial to see whether the investigational drug solanezumab could delay cognitive decline in people with amyloid accumulation. In contrast, LEARN participants did not have elevated beta-amyloid.
In total, 50 A4 and 30 LEARN participants completed a first wave of interviews 4 to 12 weeks after their amyloid imaging results were disclosed. At 1 year, 47 A4 and 30 LEARN participants were interviewed again; this second survey included a question about physician-assisted death after some participants spontaneously brought up the subject in the first survey.
The question read: “Some people tell us that they think about physician-assisted death or other ways to end their life. Is that something you’ve been thinking about?” The researchers grouped verbatim responses into themes based on whether respondents said they were not considering physician-assisted death, were ambivalent about it, were considering it, were considering suicide, or were considering other end-of-life planning such as advanced directives. All interviews were conducted from November 2014 to November 2016.
Nearly two-thirds of A4 respondents said they either had not or would not think about physician-assisted death for themselves. These people seemed more likely than other A4 respondents to describe feeling hopeful about the future, despite their increased dementia risk. Some cited personal, religious, or philosophical reasons why physician-assisted death wouldn’t be right for them, but acknowledged it could be right for others.
Approximately 20% of A4 respondents said they would pursue physician-assisted death if they became cognitively impaired, were suffering, or were burdening others. Some also said they would consider suicide if they developed cognitive impairment symptoms, but wondered whether they would be able to carry out their wishes. Many A4 respondents described increased end-of-life planning, including legal planning and telling others about their care preferences.
When LEARN respondents were asked what options they would have considered if their amyloid imaging results had been different, roughly 20% said they might have pursued physician-assisted death or suicide. Several noted that since they discovered they did not have elevated beta-amyloid, they no longer thought about these choices.
Among both groups, multiple survey respondents spoke about geographic variation in physician-assisted death laws, but few mentioned that people with dementia were ineligible.
The study is limited by its small sample size, and the findings reflect the A4 and LEARN populations only, Largent and co-authors noted. The researchers also did not ask about other end-of-life preferences or perceptions about the quality of life of people with dementia.
Last Updated April 29, 2019
This research was supported by the Alzheimer’s Association and the National Institute on Aging (NIA).
Researchers reported relationships with the NIA, the Alzheimer’s Association, Eli Lilly, and Novartis.
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.