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Table 1.  
Demographic Characteristics of Intervieweesa,b
Demographic Characteristics of Intervieweesa,b
Table 2.  
Selected Responses of Individuals With Elevated Amyloid-β to the Question, “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?”
Selected Responses of Individuals With Elevated Amyloid-β to the Question, “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?”
1.
Kuznia  R. In Oregon, pushing to give patients with degenerative diseases the right to die. Washington Post. March 11, 2018. https://www.washingtonpost.com/national/in-oregon-pushing-to-give-patients-with-degenerative-diseases-the-right-to-die/2018/03/11/3b6a2362-230e-11e8-94da-ebf9d112159c_story.html. Accessed January 31, 2019.
2.
Menzel  PT, Steinbock  B.  Advance directives, dementia, and physician-assisted death.  J Law Med Ethics. 2013;41(2):484-500. doi:10.1111/jlme.12057PubMedGoogle ScholarCrossref
3.
Jack  CR  Jr, Bennett  DA, Blennow  K,  et al.  A/T/N: an unbiased descriptive classification scheme for Alzheimer disease biomarkers.  Neurology. 2016;87(5):539-547. doi:10.1212/WNL.0000000000002923PubMedGoogle ScholarCrossref
4.
Sperling  RA, Rentz  DM, Johnson  KA,  et al.  The A4 study: stopping AD before symptoms begin?  Sci Transl Med. 2014;6(228):228fs13.PubMedGoogle ScholarCrossref
5.
Mozersky  J, Sankar  P, Harkins  K, Hachey  S, Karlawish  J.  Comprehension of an elevated amyloid positron emission tomography biomarker result by cognitively normal older adults.  JAMA Neurol. 2018;75(1):44-50. doi:10.1001/jamaneurol.2017.2954PubMedGoogle ScholarCrossref
6.
Draper  B, Peisah  C, Snowdon  J, Brodaty  H.  Early dementia diagnosis and the risk of suicide and euthanasia.  Alzheimers Dement. 2010;6(1):75-82. doi:10.1016/j.jalz.2009.04.1229PubMedGoogle ScholarCrossref
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Research Letter
April 29, 2019

Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer Disease Biomarker

Author Affiliations
  • 1Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia
  • 2Department of Sociology, Princeton University, Princeton, New Jersey
  • 3Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia
JAMA Neurol. 2019;76(7):864-866. doi:10.1001/jamaneurol.2019.0797

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).1,2 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.3

Methods

The University of Pennsylvania institutional review board approved this study, and participants gave verbal consent. Participants were recruited from the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s (A4) study, a secondary prevention trial testing whether solanezumab can slow cognitive decline in persons with amyloid accumulation, or its companion study, Longitudinal Evaluation of Amyloid Risk and Neurodegeneration (LEARN).4 The A4 participants have elevated amyloid-β, whereas LEARN participants do not. Fifty A4 and 30 LEARN participants completed a semistructured interview 4 to 12 weeks after disclosure of their amyloid imaging results; 47 and 30 of these, respectively, completed a follow-up interview at 12 months. The 12-month interview included a question about PAD after some individuals spontaneously mentioned PAD during their initial interview. All interviews occurred between November 5, 2014, and November 30, 2016. Interviews were recorded, transcribed, and analyzed in NVivo, as described elsewhere.5

Results

Interviewees, described in Table 1, expressed familiarity with PAD. When asked whether they had been thinking about PAD for themselves, nearly two-thirds of interviewees with elevated amyloid-β stated that they neither had nor would. These interviewees described personal, religious, or philosophical objections that led them to conclude PAD would not be right for them; many acknowledged that PAD could be right for others in similar circumstances (Table 2). These individuals were relatively more likely than those contemplating PAD to describe feeling optimistic or hopeful about the future, despite appreciating their increased dementia risk. Several interviewees with elevated amyloid-β expressed ambivalence about PAD; of these, many described efforts to learn more about it. Approximately 1 in 5 interviewees with elevated amyloid-β, split evenly between men and women, stated they would pursue PAD if they became cognitively impaired, were suffering, or were burdening others. Although these interviewees were no more likely than others to express pessimism about the future, they were relatively more likely to report preparing for it, eg, via legal or financial planning. Some interviewees with elevated amyloid-β stated they might consider suicide if they developed symptoms of cognitive impairment but also wondered whether they would be able to act on their interest then. One described PAD as preferable to suicide. Irrespective of their interest in PAD or suicide, many interviewees with elevated amyloid-β described increased end-of-life planning such as preparing or amending an advance directive or conveying care preferences to others.

Interviewees who did not have elevated amyloid-β, when asked to consider the counterfactual, indicated that they might have pursued PAD or suicide in roughly equivalent proportions to their elevated counterparts. Several indicated that, in light of their amyloid imaging result, they no longer worried about pursuing these options.

Across elevated and not-elevated interviewees, multiple individuals spoke to geographical variation in PAD laws. However, very few noted that PWD are ineligible under current laws.

Discussion

A minority of interviewees with elevated amyloid-β expressed a desire for PAD should they experience cognitive decline. This mirrors relative desire for PAD among other terminally ill populations. These interviewees were relatively more likely to report future planning, suggesting that they, similar to those seeking PAD now, may be particularly motivated by loss of autonomy. Our findings suggest that learning one’s amyloid imaging result does not change baseline attitudes regarding the acceptability of PAD. However, among those who indicate a personal openness to PAD, an elevated amyloid imaging result and the associated risk of cognitive decline are viewed as relevant to PAD-related decision-making. We did not ask about other end-of-life preferences or perceived quality of life of PWD, which may have added nuance to our findings. Consistent with evidence that people with mild cognitive impairment and early dementia are at risk for suicidal behavior,6 several interviewees stated they would consider suicide if they developed cognitive impairment. Although this sample reflects the A4 and LEARN study populations, its homogeneity limits generalizability.

Conclusions

Understanding attitudes toward PAD held by individuals at risk for cognitive decline owing to AD is important to inform ongoing debates about the scope of access to PAD. Further research is indicated to better understand end-of-life care preferences among people at increased risk for dementia.

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Article Information

Corresponding Author: Emily A. Largent, JD, PhD, RN, Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, 423 Guardian Dr, Blockley Hall, Room 1403, Philadelphia, PA 19104 (elargent@pennmedicine.upenn.edu).

Accepted for Publication: February 9, 2019.

Published Online: April 29, 2019. doi:10.1001/jamaneurol.2019.0797

Author Contributions: Drs Largent and Karlawish had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Largent, Harkins, Sisti, Sankar, Karlawish.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Largent, Sisti.

Critical revision of the manuscript for important intellectual content: All authors.

Obtained funding: Karlawish.

Administrative, technical, or material support: Harkins, Sisti, Karlawish.

Supervision: Karlawish.

Conflict of Interest Disclosures: Dr Largent reported grants from National Institute on Aging and grants from the Alzheimer’s Association during the conduct of the study. Dr Karlawish reported grants from Lilly Inc during the conduct of the study and grants from Novartis outside the submitted work. No other disclosures were reported.

Funding/Support: This research was supported by the Investigator-Initiated Research Grant “Study of Knowledge and Reactions to Amyloid Testing” from the Alzheimer’s Association (Dr Karlawish) and by grant P30AG010124 from the National Institute on Aging (Dr Karlawish, coinvestigator).

Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

References
1.
Kuznia  R. In Oregon, pushing to give patients with degenerative diseases the right to die. Washington Post. March 11, 2018. https://www.washingtonpost.com/national/in-oregon-pushing-to-give-patients-with-degenerative-diseases-the-right-to-die/2018/03/11/3b6a2362-230e-11e8-94da-ebf9d112159c_story.html. Accessed January 31, 2019.
2.
Menzel  PT, Steinbock  B.  Advance directives, dementia, and physician-assisted death.  J Law Med Ethics. 2013;41(2):484-500. doi:10.1111/jlme.12057PubMedGoogle ScholarCrossref
3.
Jack  CR  Jr, Bennett  DA, Blennow  K,  et al.  A/T/N: an unbiased descriptive classification scheme for Alzheimer disease biomarkers.  Neurology. 2016;87(5):539-547. doi:10.1212/WNL.0000000000002923PubMedGoogle ScholarCrossref
4.
Sperling  RA, Rentz  DM, Johnson  KA,  et al.  The A4 study: stopping AD before symptoms begin?  Sci Transl Med. 2014;6(228):228fs13.PubMedGoogle ScholarCrossref
5.
Mozersky  J, Sankar  P, Harkins  K, Hachey  S, Karlawish  J.  Comprehension of an elevated amyloid positron emission tomography biomarker result by cognitively normal older adults.  JAMA Neurol. 2018;75(1):44-50. doi:10.1001/jamaneurol.2017.2954PubMedGoogle ScholarCrossref
6.
Draper  B, Peisah  C, Snowdon  J, Brodaty  H.  Early dementia diagnosis and the risk of suicide and euthanasia.  Alzheimers Dement. 2010;6(1):75-82. doi:10.1016/j.jalz.2009.04.1229PubMedGoogle ScholarCrossref
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