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

Abstract

This study presents data regarding attitudes towards physician-assisted suicide from a survey of cognitively normal individuals enrolled in a clinical trial that required them to learn whether they have elevated amyloid-β.

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.

Table 1. Demographic Characteristics of Interviewees^a,b.

Characteristic	Elevated Amyloid, No. (%) (n=50)	Not-Elevated Amyloid, No. (%) (n=30)
Sex
Male	25 (50)	13 (43)
Female	25 (50)	17 (57)
Age, yc
65-74	35 (70)	25 (83)
≥75	15 (30)	5 (17)
Race/ethnicity
White/non-Hispanic	49 (98)	28 (93)
Asian	1 (2)	0
White/Hispanic	0	1 (3)
Multiracial/Hispanic	0	1 (3)
Education
High school	1 (2)	0
Some college or college degree	19 (38)	11 (37)
Postgraduate education	30 (60)	19 (63)
Family history of Alzheimer disease
Yes	40 (80)	21 (70)
No	10 (20)	8 (27)
Unknown	0	1 (3)
Marital status
Married/living with partner	36 (72)	26 (83)
Divorced/separated	8 (16)	2 (7)
Widowed	4 (8)	2 (7)
Single	2 (4)	1 (3)
Employment status
Retired	31 (62)	20 (67)
Part-time	14 (28)	7 (23)
Full-time	5 (10)	3 (10)

^aParticipating sites (n = 10) provided between 0 and 12 participants with elevated amyloid and 0 and 12 participants with not-elevated amyloid.

^bDistribution of demographic characteristics did not differ by amyloid status at P = .05 level, by χ², or Fisher exact test.

^cOversampled for greater representation among participants aged 65 to 74 years.

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?”.

Theme	Illustrative Quotesa
Not considering PAD	“I’m against those things. ... I know that some people think that it’s our freedom to choose our life to end; I don’t believe that.” “For myself, I don’t think Alzheimer's would be an appropriate condition for myself to ask for physician-assisted suicide.” “For myself I don’t have any great ... I mean if other people want to do that, that’s fine. I’m not anti it. But right now, I would say that those beliefs from my childhood would probably prevent me from doing it. If my mind is gone, I wouldn't know the difference.”
Ambivalent about PAD	“I would love it if [physician-assisted death] were available. … My mother now, who has very severe symptoms of Alzheimer’s, is still having fun. She's in this place, she loves this place. She’s still having fun even though she has trouble communicating. It's not a horrible way to go. Ultimately, it’s bad, but there’s no really good way that I can think of. Having had this result you look at it and you think, ‘Well, it’s not painful.’ I’m really kind of good with it.” “I just think, you know, it’s really, you can never tell where you’re at, and while it’s nice to know that something like that may be possible if push comes to shove, it’s a big decision, and it’s a decision that includes somebody else, the physician, and you can’t schedule it. It’s not like, ‘This is one of my future things that I’m going to do, and that’s physician-assisted suicide,’ so talking about it is more fluff than anything, I think.”
Considering PAD	“Well, I think that there should be more studies about it, or maybe states should participate in it. I think it is something that everybody chooses individually, but I think it would be a good thing. You should not have to suffer, and if you do not remember anything and you are just a burden, then that is not any kind of life. Yeah, I would definitely be in favor of it.” “Yeah, yeah. I do think about that, because I do watch mom suffer through this, and … her sister, and it’s cruel. It’s terrible. ... But for me, yeah, if I got that bad, I’m not one to have to suffer through that and make everybody else suffer through it.”
Considering suicide	“I suppose ... it makes me realize that I may have to commit suicide. 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.”
Other end-of-life planning	“I do have an advanced directive saying various, I don’t remember what the items on it are but I would not want to live in a vegetative state. ... I would imagine if I did develop Alzheimer’s and it got to the point where I was one of those people sitting in the home against the wall in a wheelchair drooling and what not. I don’t believe I’d want that to go on. … I simply wouldn't want any extraordinary measures taken at that point to keep me sitting in the wheelchair drooling if I wasn’t able to be aware of what was going on around me.” “I did redo my advance directive and make it much more specific about what things I wanted and did not want. I made sure that copies of that got to my doctors and to the people who will be responsible for seeing that that is carried out if something happens to me. I redid that. That is a function of the [A4] study and knowing more about what things could happen to me. When I can no longer make decisions, there are all sorts of things I do and don’t want done.”

Abbreviation: PAD, physician-assisted death.

^aRespondent characteristics have not been included to preserve anonymity.

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.