Largent EA, Terrasse M, Harkins K, Sisti DA, Sankar P, Karlawish J. Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer Disease Biomarker. JAMA Neurol. 2019 Jul 1;76(7):864-866. PubMed.

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  1. This short report represents a critically important topic for the field. Previous surveys and hypothetical studies have found that approximately 10 percent of cognitively unimpaired older adults would want to learn AD genetic or biomarker information to instruct planning suicide (Ott et al., 2016; Caselli et al., 2014). Here, Dr. Largent and colleagues present real-world data from participants who have learned their biomarker result through participation in a preclinical AD trial. Approximately 20 percent of people who learned they had “elevated” brain amyloid indicated that they would consider physician-assisted suicide, a notable increase from the hypothetical studies, though the sample size is relatively small.

    Importantly, the experiences of these individuals may represent a “best-case scenario,” since they underwent structured education and counseling before and after learning their biomarker result (Harkins et al., 2015). Given the wide-scale availability of biomarker and genetic tests, and especially in the absence of effective therapies, a major concern is the impact disclosure might have on people who learn this information without adequate education and counseling.

    References:

    Ott BR, Pelosi MA, Tremont G, Snyder PJ. A Survey of Knowledge and Views Concerning Genetic and Amyloid PET Status Disclosure. Alzheimers Dement (N Y). 2016 Jan 1;2(1):23-29. PubMed.

    Caselli RJ, Langbaum J, Marchant GE, Lindor RA, Hunt KS, Henslin BR, Dueck AC, Robert JS. Public perceptions of presymptomatic testing for Alzheimer disease. Mayo Clin Proc. 2014 Oct;89(10):1389-96. Epub 2014 Aug 26 PubMed.

    Harkins K, Sankar P, Sperling R, Grill JD, Green RC, Johnson KA, Healy M, Karlawish J. Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants. Alzheimers Res Ther. 2015;7(1):26. Epub 2015 May 12 PubMed.

    View all comments by Joshua Grill

  2. Bearing in mind that the population is people who are enrolled in clinical trials for early diagnosis/treatment of AD, either because they are biologically at high risk of AD or have been interested enough about their cognitive health to participate in such a study, the findings don't surprise me. I think the two most important findings are that people who self-present for dementia assessment have already got a good idea about their end-of-life plans and this doesn't seem to alter with investigation results. Secondly, there is a broad range of end-of-life plans across the whole spectrum.

    While of course the work needs replication in larger, more representative populations, it does suggest that clinicians might need to consider exploring the end-of-life plans of patients who self-refer in the initial assessment in case there is suicide risk pending.

    View all comments by Brian Draper

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  1. Amyloid-PET Results Lead Some to Ponder Assisted Death in Future