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Extending Medical Aid in Dying to Incompetent Patients: A Qualitative Descriptive Study of the Attitudes of People Living with Alzheimer’s Disease in Quebec

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Background: In Quebec, medical aid in dying (MAiD) is legal under certain conditions. Access is currently restricted to patients who are able to consent at the time of the act, which excludes most people with dementia at an advanced stage. However, recent legislative and political developments have opened the door to an extension of the legislation that could give them access to MAiD. Our study aimed to explore the attitudes of people with early-stage dementia toward MAiD should it become accessible to them. Methods: We used a qualitative descriptive design consisting of eight face-to-face semi-structured interviews with persons living with early-stage Alzheimer’s disease, followed by a thematic analysis of the contents of the interviews. Results and Interpretations: Analysis revealed three main themes: 1) favourable to MAiD; 2) avoiding advanced dementia; and 3) disposition to request MAiD. Most participants anticipated dementia to be a painful experience. The main reasons for supporting MAiD were to avoid cognitive loss, dependence on others for their basic needs, and suffering for both themselves and their loved ones. Every participant said that they would ask for MAiD at some point should it become available to incompetent patients and most wished that it would be legal to access it through a request written before losing capacity. Conclusion: The reasons for which persons with Alzheimer’s disease want MAiD are related to the particular trajectory of the disease. Any policy to extend MAiD to incompetent patients should take their perspective into account.
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Document generated on 12/16/2021 12:26 p.m.
Canadian Journal of Bioethics
Revue canadienne de bioéthique
Extending Medical Aid in Dying to Incompetent Patients: A
Qualitative Descriptive Study of the Attitudes of People Living
with Alzheimer’s Disease in Quebec
Vincent Thériault, Diane Guay and Gina Bravo
Éthique et AMM
MAiD Ethics
Volume 4, Number 2, 2021
URI: https://id.erudit.org/iderudit/1084452ar
DOI: https://doi.org/10.7202/1084452ar
See table of contents
Publisher(s)
Programmes de bioéthique, École de santé publique de l'Université de
Montréal
ISSN
2561-4665 (digital)
Explore this journal
Cite this article
Thériault, V., Guay, D. & Bravo, G. (2021). Extending Medical Aid in Dying to
Incompetent Patients: A Qualitative Descriptive Study of the Attitudes of People
Living with Alzheimer’s Disease in Quebec. Canadian Journal of Bioethics /
Revue canadienne de bioéthique, 4(2), 69–77. https://doi.org/10.7202/1084452ar
Article abstract
Background: In Quebec, medical aid in dying (MAiD) is legal under certain
conditions. Access is currently restricted to patients who are able to consent at
the time of the act, which excludes most people with dementia at an advanced
stage. However, recent legislative and political developments have opened the
door to an extension of the legislation that could give them access to MAiD. Our
study aimed to explore the attitudes of people with early-stage dementia
toward MAiD should it become accessible to them. Methods: We used a
qualitative descriptive design consisting of eight face-to-face semi-structured
interviews with persons living with early-stage Alzheimer’s disease, followed
by a thematic analysis of the contents of the interviews. Results and
Interpretations: Analysis revealed three main themes: 1) favourable to MAiD;
2) avoiding advanced dementia; and 3) disposition to request MAiD. Most
participants anticipated dementia to be a painful experience. The main reasons
for supporting MAiD were to avoid cognitive loss, dependence on others for
their basic needs, and suffering for both themselves and their loved ones.
Every participant said that they would ask for MAiD at some point should it
become available to incompetent patients and most wished that it would be
legal to access it through a request written before losing capacity. Conclusion:
The reasons for which persons with Alzheimer’s disease want MAiD are related
to the particular trajectory of the disease. Any policy to extend MAiD to
incompetent patients should take their perspective into account.
V Thériault, D Guay, G Bravo
Can J Bioeth / Rev Can Bioeth. 2021;4(2):69-77
2021 V Thériault, D Guay, G Bravo. Creative Commons Attribution 4.0 International License ISSN 2561-
4665
ARTICLE (ÉVALUÉ PAR LES PAIRS / PEER-REVIEWED)
Extending Medical Aid in Dying to Incompetent Patients: A
Qualitative Descriptive Study of the Attitudes of People Living
with Alzheimer’s Disease in Quebec
Vincent Thériaulta, Diane Guaya, Gina Bravoa
Résumé
Abstract
Contexte : Au Québec, l’aide médicale à mourir (AMM) est
légale sous certaines conditions. L'accès est actuellement limité
aux patients qui peuvent donner leur consentement
au moment
de l'acte, ce qui exclut généralement les personnes atteintes
d’un trouble neurocognitif majeur en stade avancé. Cependant,
de récents développements législatifs et politiques ouvrent la
porte à une extension de la législation qui pourrait leur d
onner
accès à l'AMM. Notre étude vise à explorer le point de vue de
personnes atteintes de la maladie d’Alzheimer en stade léger
envers l’AMM dans l’éventualité où celle-
ci leur serait
accessible. Méthode
: Nous avons employé un devis qualitatif
descriptif consistant en huit entretiens semi-
structurés avec des
patients atteints de la maladie d’Alzheimer, suivis d’une analyse
thématique du contenu des entretiens.
Résultats et
interprétation
: L'analyse a révélé trois thèmes principaux : 1)
favorable à l’AMM
; 2) éviter les stades avancés de la maladie ;
et 3) disposition à demander l’AMM. La plupart des participants
anticipent que la maladie d’Alzheimer sera une expérience
souffrante. Les principales raisons de soutenir l’AMM étaient
d'éviter la perte cognitive, la dépendance vis-à-
vis des autres
pour leurs besoins de base et la souffrance tant pour eux-
mêmes que pour leurs proches. Tous les participants ont
indiqué qu'ils demanderaient éventuellement l’AMM si elle
devenait accessible aux patients inaptes et l
a plupart
souhaiteraient qu'il soit possible d'y accéder via une directive
anticipée avant de perdre sa capacité. Conclusion
: Les raisons
pour lesquelles les personnes atteintes de la maladie
d’Alzheimer souhaitent l’AMM sont directement liées à la
trajec
toire particulière de la maladie. Toute politique visant à
étendre l’AMM à des patients inaptes devrait prendre en compte
leurs points de vue.
Background: In Quebec, medical aid in dying (MAiD) is legal
under certain conditions. Access is currently
restricted to
patients who are able to consent at the time of the act, which
excludes most people with dementia at an advanced stage.
However, recent legislative and political developments have
opened the door to an extension of the legislation that could
give
them access to MAiD. Our study aimed to explore the attitudes
of people with early-
stage dementia toward MAiD should it
become accessible to them. Methods
: We used a qualitative
descriptive design consisting of eight face-to-face semi-
structured interviews with persons living with early-
stage
Alzheimer’
s disease, followed by a thematic analysis of the
contents of the interviews. Results and Interpretations
: Analysis
revealed three main themes: 1) favou
rable to MAiD; 2) avoiding
advanced dementia; and 3
) disposition to request MAiD. Most
participants anticipated dementia to be a painful experience.
The main reasons for supporting MAiD were
to avoid cognitive
loss, dependence on others for their basic needs, and suffering
for both themselves and their lov
ed ones. Every participant said
that they would ask for MAiD at some point should it become
available to incompetent patients and most wished
that it would
be legal to access it through a request written before losing
capacity. Conclusion: The reasons for
which persons with
Alzheimer’
s disease want MAiD are related to the particular
trajectory of the disease. Any policy to extend MAiD to
incompetent patients should take their perspective into account.
Mots-clés
Keywords
euthanasie, démence, qualitatif, AMM, incompétence, directive
anticipée
euthanasia, dementia, qualitative, MAiD, incompetence,
advance request
Affiliations
a Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Canada
Correspondance / Correspondence: Vincent Thériault, vincent.theriault3@usherbrooke.ca
INTRODUCTION
In 2017, it was estimated that close to 50 million people worldwide had Alzheimers disease, a common cause of dementia,
and this number could reach 131.5 million in 2050 (1). The disease is still incurable to this day and its progression gradually
affects cognitive functions and the ability to carry out activities of daily living. In the advanced stage, patients can suffer greatly
physically and/or psychologically and most are unable to consent to care (2-5). Many of these people fear the state in which
they may eventually find themselves, even more than the suffering they may endure at the end of their lives (6-7). At that point,
some care options are available, such as refusing life-sustaining interventions and palliative sedation (8). But for those who
do not wish to go through the advanced stages of dementia, the only options are then to voluntarily stop eating and hydrating
themselves or to take their own life (9). That last option is problematic because the disease eventually leads to an altered
awareness state and makes it increasingly difficult to plan a suicide (10). Another option is thus increasingly considered across
the world: voluntary euthanasia.
Voluntary euthanasia is legal in Quebec under certain conditions since December 10, 2015. Called medical aid in dying (MAiD)
in the legislation, it was originally restricted to, among other conditions, those who are able to consent at the time of the act
and who are at the end of their lives, which excludes most people with dementia. It also excludes people living with the disease
Thériault, Guay & Bravo 2021
Page 70
who want to access MAiD through an advance request made before losing capacity. Some commentators described this
situation as discriminatory; others saw it as necessary to protect vulnerable people (11). In 2017, the government of Quebec
opened the door to an expansion of the legislation to some incompetent patients and commissioned an expert panel to reflect
on the issue. The expert panel proposed, among other things, to allow the formulation of an advance request for MAiD in
anticipation of the inability to consent (12). During that time, a landmark case would also cause the end of lifecriteria to be
deemed unconstitutional by the Superior Court of Quebec (13). A bill by the federal government aimed at making changes to
MAiD is currently under review (14). If the bill passes, people living with dementia could access MAiD if they are competent at
the time of the procedure and are suffering unbearably, but there is no provision to authorize advance requests.
MAiD in the context of dementia involves various specific issues that make it more complex compared to when the ability to
consent is still present. Allowing MAiD at the beginning of the disease while the person is still competent risks ending life
prematurely, while at the terminal stage it may be impossible to ensure that the person really wants to die due to their inability
to communicate clearly (15-16). Some further argue that an advance request for MAiD should not be carried out because the
person with dementia could have adapted to their situation or changed their mind (17-25). Moreover, health care professionals
and families will likely have difficulty determining when the time has come to administer MAiD (2,18). Finally, some question
whether an advance request should ever have authority in the decision to terminate the life of a person who has lost the ability
to consent (18,26-28).
Considering that people living with dementia would be the most directly affected by a change in legislation, not taking their
opinion into account would be unjust. However, the vast majority of the studies of attitudes toward MAiD in the context of
dementia are survey-based and target either physicians, nurses, caregivers of persons with dementia or the general public (29-
33). Also, while surveys are valuable for capturing the views of these types of stakeholders, a qualitative approach seems
more appropriate to in-depth study of the attitudes, perceptions and emotions of people with cognitive impairment. To our
knowledge, only one qualitative study directly investigated this question with participants who had dementia themselves.
Daskal et al (34) used qualitative interviews to study the attitudes of patients and their caretakers toward hastening death in
Illinois, a US state where no euthanasia law was passed at the time or since. Half of their patient sample (n=26) were in favour
of euthanasia. The main reasons for support were the desire to have freedom of choice, to avoid suffering and to avoid being
a burden to their family, whereas the reasons for not supporting euthanasia were generally related to religious beliefs. The
authors concluded that interviewing patients with mild dementia about their opinion regarding euthanasia was feasible and
therefore they should be included in these kinds of discussions. In line with this recommendation, and given the paucity of data
on this topic, we explored the attitudes of people with early-stage dementia toward MAiD should it become accessible to them.
METHODS
Design
A qualitative descriptive design was chosen for the study. This design entails collecting narrative data to obtain a
comprehensive description of individualsperspectives and allows flexibility to use or not a particular theory or framework (35).
Although this design retains an important part of interpretation, it produces results that are closer to the data compared to other
qualitative designs (35). This study was approved by the Research Ethics Board of the CIUSSS Estrie-CHUS (file # 2018-
2567) and signed informed consent was obtained from all participants.
Participants and procedures
The study took place between February and December 2018. At that time, the expert panel previously mentioned had not
submitted their report and the end of lifecriteria was still present in the law. The study was conducted among French-speaking
patients admitted at the Memory Clinic of the CIUSSS Estrie-CHUS, in Sherbrooke, Quebec, using a list of previously signed
consent authorizing researchers to contact them. To be eligible, participants had to be diagnosed with Alzheimers disease
and still be at the early stage, which was operationalized by a score above 18 on Folsteins Mini-Mental State Examination
(MMSE) and/or above 17 on the Montreal Cognitive Assessment (MoCA) test (36,37), recorded in the patient’s medical chart
within the last two years. All potential participants were previously deemed capable of making decisions for themselves,
including giving consent to participate in research.
Following this medical chart review, a letter introducing the study was mailed to potentially eligible participants who were
contacted by telephone one week later to gauge their interest in participating. Patients were excluded if the information present
in the medical chart or the telephone call revealed potential incapacity or vulnerability that would make it inappropriate to solicit
their participation. An interview guide (Box 1) was developed and tested with 3 persons. Zanna and Rempels revised tripartite
model of attitudes was used as an inspiration for its development and also to guide the data analysis process (38). This model
postulates that attitudes are based on cognitive (knowledge, beliefs), affective (feelings, emotions), and conative (willingness
to act, intentions) information.
Thériault, Guay & Bravo 2021
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Box 1: Interview guide
a. The interviewer provided necessary explanations to participants who misunderstood the legislation in effect at the time.
b. Asked only to participants who expressed the desire to request MAiD.
Demographic data were collected at the beginning of the interview, which were conducted by the first author (VT), an
experienced geriatric nurse. Attitude data was gathered using digitally recorded, semi-structured, face-to-face in-depth
interviews with open-ended questions (39). The questions were not necessarily asked exactly as they appeared in the interview
guide, nor necessarily always in that order. The interview process was fluid, iterative, and left room for improvisation. Sub-
questions and clarification questions were frequently asked depending on the flow of the conversation. Considering their
vulnerability and the sensitivity of the topic, participants were given the choice to be accompanied by a person of their choosing
to act in a supportive role. All interviews were manually transcribed by VT. In order to enhance the scientific rigor of the study,
field notes and reflexive memos were kept to add descriptions of the context of the interviews, record impressions and give
insights for the analysis process (40). As the research topic was considered sensitive, information about services available
from the local Alzheimer Society was provided, should a participant require further support.
Data analysis
A thematic analysis was conducted to extract key themes from transcripts (41). No analysis software was used. Transcripts
were initially coded by VT according to the three components of the revised tripartite model of attitudes and then reviewed by
a team member (DG) until consensus was reached. Next, subthemes were clustered together and compared to generate
branching categories and ultimately a thematic tree. This process, along with iterative data collection, continued until thematic
saturation was reached, that is when further coding added no new relevant themes (42). A thematic journal was used to
document thoughts on the formulation of subthemes, thematic groupings and any other element related to data analysis.
RESULTS
Of the 76 medical charts consulted, a total of eight participants were interviewed before reaching thematic saturation. Eight
potentially eligible participants refused to participate and 60 were excluded. The latter were excluded mainly because their
conditions were more advanced than previously believed, making the interview impossible, or presented a significant
vulnerability that could potentially make the interview risky for their psychological well-being. The majority of participants were
female (5/8) and their age ranged from 57 to 84 years. The interviews took place at participantshomes and lasted between
30 and 50 min. All but two participants chose to be interviewed in the presence of a close relative. Participant characteristics
are presented in Table 1.
Table 1: Participant demographic data
Participant
(Fictional name) Gender Age MMSE a MoCA a
College or
university
degree
Accompanied
by a close
relative
Knows / has known
someone close with
dementia
Religiosity b
Alice F 84 24 23 Yes No Yes
Catholic,
believer and actively practicing
Bernard M 81 23 18 No Yes Yes
Catholic,
believer and actively practicing
Celine F 57 25 19 Yes Yes No
Catholic,
believer but rarely practicing
Denise F 77 30 26 Yes Yes No
Catholic,
believer but rarely practicing
Estelle F 80 26 24 No Yes Yes
Catholic,
believer and actively practicing
Fernand
M
73
26
22
No
Yes
No
Nonbeliever
Ginette F 73 26 25 No No Yes
Catholic,
believer but rarely practicing
Henri M 66 25 20 Yes Yes Yes
Catholic,
believer but rarely practicing
a. on a scale from 0 to 30. Lower scores imply greater cognitive impairment; b. in a population (Quebec) where approximately 75% of people are catholic (43).
MMSE: Mini-Mental State Examination; MoCA: Montreal Cognitive Assessment
Analysis of the transcripts revealed three main thematic categories: 1) favorable to MAiD; 2) avoiding advanced dementia; and
3) disposition to request MAiD. As shown in Figure 1, considering the findings, we grouped the cognitive and affective
components of the revised tripartite model of attitudes under two themes because they often emerged together. The third
theme corresponds to the conative component. Each theme will be described below and illustrated with verbatim extracts.
Thériault, Guay & Bravo 2021
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Verbatim were translated from French to English by the authors for the purposes of this paper. The translation has been kept
as literal as possible.
Figure 1: Main themes
Cognitive & affective components: Favorable to MAiD
All participants expressed positive opinions and feelings toward MAiD in general. They thought it was a good thing to not
unnecessarily stretch an unavoidable death, especially if there is suffering. One even viewed MAiD as a favour: You
know…youre there. Its a favour if he [a physician] helps you die. You will die anyway.” (Alice) Another participant said that
MAiD was preferable to traditionalsuicide because it was painless: You get a shot and you go. That doesnt hurt. Instead of
going over a bridge and throwing yourself off, or something.(Fernand) Every participant felt the same way about MAiD in the
context of dementia, and so thought that it should be accessible to this population. If the law was extended to people who
probably have the disease or are going to, […] I think its very good.(Ginette)
Considering the unpredictable progression of dementia, two participants expressed that they would personally be relieved if
they could consent to MAiD in advance.Free from this worry. Relieved that we can move on.(Henri) The other one echoed
that feeling but emphasized the positive impact that advance requests could have for their loved ones: I could do it in advance
for them. Because its going to be hard to decide, you know? My family…If I did it in advance, I feel it would be easier.” (Alice)
Cognitive & affective components: Avoiding advanced dementia
Participants had differing reasons for supporting MAiD, but there was a common thread: to avoid the negative consequences
that come with advanced dementia. Those reasons were closely related to the particular trajectory of the disease.
Loss of autonomy
Although most participants were still quite independent, the first category of consequences was related to the loss of autonomy
in basic functions and dependence on others for their needs. For example, being unable to drive, to speak clearly, to eat by
themselves, go to the toilet or just being unable to take care of themselves in general. One participant expressed this loss of
independence by her recently revoked driving license: I had a nice little car. For the last two years I was dragging a little. This
year, they [her family] decided it was the end. That, I found hard.(Denise)
Cognitive impairment
Another category of consequences had to do with the cognitive losses commonly brought on by dementia. All participants
already had some degree of cognitive impairments, usually related to their memory, but the severity of impairments varied.
However, no matter how advanced they were, participants feared that it would get worse. Most evoked a general fear of
cognitive loss, but others were more specific in what they feared. One participant feared the moment when they would no
longer recognize their loved ones anymore: You know, if I cant recognize the people around me, I do not belong here
anymore.” (Alice) Three participants feared that they would get disconnected, meaning that they could not really interact with
anything or anyone anymore: Why let them [people with advanced dementia] not be aware of anything? Thats not a life.
(Estelle) Two felt angst at the prospect of not totally being themselves anymore: Their personality can change. They can
perhaps become aggressive. Or they are suffering. […] I do not want to live when I have no more knowledge, when I will not
be myself anymore.(Ginette)
When the subject of taking a decision for a future-self that may not correspond to the present-self was brought up by the
interviewer, that last participant made it clear that the medical team and her family should give priority to what she expressed
in her advance request if she was no longer able to make a decision: […] when the disease is very advanced, that I am no
longer myself and I change my mind. [...] they should listen to me now.(Ginette)
Thériault, Guay & Bravo 2021
Page 73
Suffering of loved ones
Another reason to want MAiD reported by six out of eight participants was to avoid hurting their loved ones or be a burden. It
could be related to witnessing their deterioration and/or having to take care of them. If I keep going, theyre the ones who are
going to stay, who are going to have...they are going to have to go through this.(Bernard) One of these participants seemed
even more concerned about the suffering he could be causing to his loved ones than about his own suffering: I dont have too
much trouble with pain […]. Its more for the others.(Henri)
Personal suffering
Despite generally prioritising the suffering of their loved ones, five participants also feared their own potential suffering,
although they were often unclear about what kind of suffering they feared. One participant evoked something akin to an
existential suffering: What would be the value that I would have in life? None.(Fernand) Another seemed to fear actual
physical pain: I would have to be sick, but really sick, you know? And have pain, especially pain.(Denise)
Social repercussions
One participant went even further in the consequences that might be avoided with MAiD and inferred that it could bring a social
benefit. Please. We as a society, these people, can we take them to their last rest, and then give the time to people who really
need it?(Henri)
Ultimately, considering that they were all in the early stage of the disease, most participants said that they were not currently
suffering that much. But they were aware of the progression of the disease, and all were convinced that the suffering would
eventually come for them and their loved ones. In my mind, which is still there [laugh], I know that at some point it will be
worse. For my spouse too…(Celine)
Conative component: Disposition to request MAiD
All participants made it clear that not only were they in favour of MAiD, but they would personally ask for it at some point should
it become available to incompetent patients. They also wanted the opportunity to consent themselves in advance while they
still could. [...] I want to consent while my decision is still in my mind, and I am not too much demented to accept it. [...] Its
good that I decide while Im lucid. And that I decide for myself.(Ginette)
One participant noted that he would like to consent himself specifically to spare his family from having to make the decision:
“I’d rather that it would be me who decides to leave, so that they do not feel guilty(Bernard) That being said, all participants
made it clear that they would not wish to have MAiD at the point where they were currently in the disease. But when they would
want to receive it varied widely. For two participants, the time would come when they would be near the end of their life, even
though they probably would not be able to consent by themselves anymore. If there is no more treatment possible, I feel
myself deteriorating and there is no coming back. […] That is, the end is coming.(Ginette)
In one case, the participant specifically placed the responsibility to determine the right time on the medical team: When the
doctor thinks that there is nothing more to do, its time.(Bernard) For others, MAiD should come much earlier, when the
incapacities would become more pronounced. A participant even mentioned that he would ask for MAiD only if he did not have
to wait until the end of his life, otherwise he would commit suicide: Because if I could see myself at such a point [at the
advanced stage of the disease], maybe I would kill myself before I get there.(Fernand)
Two participants mentioned that they would request MAiD when they get there, but when that was wasnt entirely clear.For
me, I would agree. It would be a good thing. When I get there!” (Alice) One of these two participants observed that it was hard
to know for sure when exactly MAiD requests ought to be carried out. When asked how far she would let the disease progress,
she answered: How far ... I really cant say. But what comes to me is that I cannot know for sure.(Denise)
Considering that MAiD requests would be carried out after they had lost their ability to consent, all participants were confident
that either the medical team, their loved ones or both would be able to determine the appropriate moment. With all the people
who are going to be involved in this, Im not worried about them, theyll make the right decision. Im not worried.(Henri)
DISCUSSION
To our knowledge, this is the first qualitative study to provide insight into the perspectives of persons living with early-stage
dementia about MAiD in a jurisdiction where this practice is legal, but as yet only for competent patients. This confirms, as
Daskal et al (34) concluded, that it is possible although difficult to recruit and interview people with early-stage dementia and
so learn their views. The main difficulty was related to the progression of Alzheimers disease and the small window of time
open for recruitment. It was often found that the potential participants were past the early stage of the disease or had even
died since their last cognitive test, which explains in part the low participation rate. For a few participants, the interview process
was more challenging due to hearing or speaking difficulties. Some were also a bit nervous, and their discourse was therefore
more limited than others. And some had difficulty clarifying their thoughts precisely, so the depth of the discussions varied.
However, all participants were able to complete the interview and communicated their appreciation of the experience.
Thériault, Guay & Bravo 2021
Page 74
To summarize, every participant wished that it would be legal for them to access MAiD. The reasons for which participants
supported MAiD were all related to the negative consequences of dementia, such as suffering and being a burden to loved
ones, as found by Daskal et al. (34). Participants also expressed that they would personally ask for MAiD at some point, though
the moment when the request should be carried out varied. Findings from this small sample concur with those from other
stakeholders and the general population in whom high support was found in Quebec for extending MAiD to incompetent
patients (30-33,44). In a systematic review of factors influencing opinions on this issue, Tomlinson and Stott (29) found a strong
association between being a religious person and being against MAiD. This does not appear to be the case in our sample.
Despite almost all our participants reporting that they were religious, none mentioned any argument related to their religious
beliefs for supporting or opposing MAiD. Several reported personally knowing someone with advanced dementia, and for
some, this seemed to be decisive in them wanting to access MAiD in the future. Clarke et al. (45) found that experiencing
similar illness in relatives and friends increased the probability of expressing a preference to access measures to help die
peacefullyamong different end-of-life care options. This seems consistent with our results.
The main reasons reported for supporting MAiD echo those mentioned by Menzel (46), namely, not wanting to go through
severe dementia and what it brings. Most participants viewed living with dementia as a painful experience, but this suffering
seems to stem more from the fear of what is to come, as de Beaufort and van de Vathorst (23) argue. In a qualitative study
about the expectations of living with dementia, Read et al. (47) found that their participants mainly feared the loss of control
over their life and the prospect of being a burden to their loved ones. Almost all our participants expressed similar fears.
However, a gradual loss of awareness of the disease and its impacts typically comes with dementia (21,48). Moreover, referring
to the disability paradox, some authors argue that expected experiences of dementia patients are often more negative than
actual experiences (17,20). As such, their case is distinct from that of patients who currently have access to MAiD in Quebec
since these mainly base their requests on their current suffering (49,50).
The participants mostly favoured making advance requests rather than letting someone else decide whether and when they
would have MAiD. In the Netherlands, where it is legal to carry out advance euthanasia requests in some circumstances, van
Wijngaarden et al. (25) found that people with dementia who made such a request viewed this as a way to keep some control
over their life. However, it also led to some anxiety when they considered issues such as potential changes over time in their
desire to die, the possibility of disagreement between the people involved and the difficulty to determine the right moment to
carry out the request. Although studies on treatment preferences at the end of life report some stability over time, those
preferences tend to be more persistent when they come from individuals with a stable health condition, implying that advance
directives would be more difficult to execute in the context of dementia (51,52).
Furthermore, very few physicians agree to carry out advance euthanasia requests in the Netherlands (2,53). The reasons are
mainly related to the difficulty of assessing suffering in these patients and the impossibility of confirming their wish to die (53).
In Quebec, Bravo et al. (30) found considerable support (71%) among physicians to extend MAiD in the terminal stage of the
disease, but much less (45%) in cases where the incompetent patient may still have several years to live. This contrasts with
the views of most of our participants who not only thought that they should have access to MAiD before the latter stages of the
disease, but also trusted that the medical team would carry out their request. However, they did not agree themselves on when
exactly they should have access to MAiD, which could make it difficult for their family, the medical team and legislators to
determine the right time. Regarding this issue, the Dutch legislation allows for competent patients with dementia to draw up
an advance request setting out their conditions to carry out euthanasia, as long as it is compatible with the law (16). This can
still cause problems, as demonstrated by the criminal trial of a doctor in the Netherlands who administered euthanasia to a
patient with dementia whose request could be interpreted in different ways, one of which suggested that she wanted to consent
to euthanasia herself when she was still competent (16). Our participants made it seem much more straightforward than what
practical experience elsewhere suggests.
STRENGTHS AND LIMITATIONS
This study has several strengths, including its relevance in the current legislative context, the use of a theoretical framework
guiding the data collection and analysis, and the study population composed of people living with dementia. People with
dementia are most directly concerned by the possible expansion of MAiD to incompetent patients, yet their views have rarely
been investigated (29). We therefore believe that this study contributes to a certain social justice, considering that people living
in a vulnerable situation have now been heard by public decision-makers. Limitations must also be acknowledged. Although
thematic saturation was reached, our sample was homogeneous with regard to ethnicity and religion, which are two factors
known to be associated with attitudes toward MAiD (29,54). It is conceivable that other themes would have emerged from
participants with different cultural backgrounds. This possibility should be explored in future studies. There is also the possibility
of a volunteer bias, meaning that those who chose to participate in the study could be more inclined to support MAiD. We do
not know whether eligible persons who refused to participate (n=8) were in favour or not. Furthermore, the wording of some of
our questions could be interpreted as being more positive than neutral, for instance when we refer to the fact that MAiD could
be a choiceto which participants would have “access”. Moreover, some authors recommend conducting a validation of the
themes with the participants after the analysis to increase internal validity, although others question the true value of doing
so (55-57). Considering the declining memory of our participants, which would have potentially decreased the benefit anyway,
coupled with their vulnerability and the sensitivity of the research topic, we elected not to do such a validation. Lastly, another
potential limit of our study is that attitudes toward alternative end-of-life treatments to MAiD were not explored. We do not think,
however, that doing so would have significantly changed the results, for two main reasons. First, most participants were not
Thériault, Guay & Bravo 2021
Page 75
worried about physical pain, but rather feared the various losses associated with the disease as well as its impact on their
loved ones. Consequently, they would ask for MAiD well before the terminal stage of the disease. Second, Bravo et al. (30-
33) found high levels of support for extending MAiD among various stakeholder groups (excluding people with early-stage
dementia) who were presented with two other end-of-life care options, namely the withholding of antibiotics should the patient
develop a life-threatening pneumonia and continuous deep sedation. Nonetheless, future studies could explore whether
discussing these options with people with early-stage dementia changes their views on MaiD. Future studies could also probe
participants on a scenario in which their future selves wishes would seem to contradict their current wishes with regard to
MAiD, like the example in the Netherlands mentioned earlier.
CONCLUSION
This study explored the views of eight persons living with early-stage Alzheimers disease related to the possible expansion of
the Quebec legislation to give them access to MAiD. While we of course cannot generalize this sample to the entire population
in a quantitative sense, our participants views are favourable, in general as well as for themselves. The participants would
personally ask for MAiD at some point if it were legal to do so in order to avoid the negative consequences of dementia. People
who are in favour of MAiD generally wish to avoid suffering at the end of life, while people with dementia seem to have other
reasons that are related to the particular trajectory of the disease. Indeed, most participants wanted to avoid the multiple losses
associated with advanced and terminal dementia and wished to have access to MAiD much earlier. This position differs from
that of physicians, who are much less in agreement with the extension of MAiD to incompetent patients who may still have
many years to live. Future studies should explore ways to reconcile these views. In the meantime, any policy to extend MAiD
to incompetent patients should consider the perspective of all those directly concerned, including people living with dementia.
Reçu/Received: 28/11/2020
Publié/Published: 1/12/2021
Remerciements
Acknowledgements
Nous remercions tous les participants pour leur temps
généreux. Nous remercions également le personnel de la
Clinique de la Mémoire du CIUSSS Estrie-
CHUS pour leur
collaboration. Cette étude faisait partie d’
un programme de
recherche plus vaste dirigé par GB et financé par la Société
Alzheimer du Canada (subvention #16-11).
We are grateful to all the participants for their generous time. We
also thank the staff of the Memory Clinic of the CIUSSS Estrie-
CHUS for their collaboration.
This study was part of a larger
research program directed by GB and funded by the Alzheimer
Society of Canada (grant #16-11).
Conflits d’intérêts
Conflicts of Interest
Aucun à déclarer
None to declare
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REFERENCES
1. ADI, Wimo A, Ali G-C, et al. World Alzheimer Report 2015: The Global Impact of Dementia: an Analysis of
Prevalence, Incidence, Cost and Trends. London: Alzheimer’s Disease International (ADI); 2015.
2. Rurup ML, Onwuteaka-Philipsen BD, et al. Physicians’ experiences with demented patients with advance
euthanasia directives in the Netherlands. Journal of the American Geriatrics Society. 2005;53(7):1138-44.
3. Herrmann N, Gauthier S. Diagnosis and treatment of dementia: 6. Management of severe Alzheimer disease.
Canadian Medical Association Journal. 2008;179(12):127987.
4. Vandervoort A, Van den Block L, van der Steen JT, et al. Nursing home residents dying with dementia in Flanders,
belgium: a nationwide postmortem study on clinical characteristics and quality of dying. Journal of the American
Medical Directors Association. 2013;14(7):485-92.
5. Midtbust MH, Alnes RE, Gjengedal E, Lykkesler E. A painful experience of limited understanding: healthcare
professionals’ experiences with palliative care of people with severe dementia in Norwegian nursing homes. BMC
Palliative Care. 2018;17:25.
Thériault, Guay & Bravo 2021
Page 76
6. Menzel PT, Steinbock B. Advance directives, dementia, and physician-assisted death. Journal of Law, Medicine
and Ethics. 2013;41(2):484-500.
7. Oregon Public Health Division. Annual Report 14: Oregon’s Death with Dignity Act2011.
8. Arcand M. End-of-life issues in advanced dementia: Part 2: management of poor nutritional intake, dehydration, and
pneumonia. Canadian Family Physician. 2015;61(4):337-41.
9. Menzel PT, Chandler-Cramer MC. Advance directives, dementia, and withholding food and water by mouth.
Hastings Center Report. 2014;44(3):23-37.
10. Conejero I, Navucet S, Keller J, et al. A complex relationship between suicide, dementia, and amyloid: a narrative
review. Frontiers in neuroscience. 2018;12:371.
11. Committee on Health and Social Services. Special consultations and public hearings on Bill 52, An Act respecting
end-of-life care. Quebec National Assembly; 2013.
12. Ministère de la Santé et des Services sociaux. L’aide médicale à mourir pour les personnes en situation dinaptitude
: le juste équilibre entre le droit à l’autodétermination, la compassion et la prudence. no 19-828-04W; 2019.
13. Truchon c. Procureur général du Canada, 2019 QCCS 3792.
14. Loi modifiant le Code criminel (aide médicale à mourir), projet de loi no C-7, (dépôt et 1re lecture 5 octobre 2020),
2e sess., 43e légis. (Can.).
15. Cohen-Almagor R. First do no harm: euthanasia of patients with dementia in Belgium. The Journal of Medicine and
Philosophy. 2016;41(1):74-89.
16. Miller DG, Dresser R, Kim SYH. Advance euthanasia directives: a controversial case and its ethical implications.
Journal of Medical Ethics. 2019;45(2):849.
17. de Boer ME, Hertogh CMPM, Dröes R-M, et al. Suffering from dementia - the patient’s perspective: a review of the
literature. International Psychogeriatrics. 2007;19(6):1021-39.
18. de Boer ME, Hertogh CMPM, Dröes R-M, et al. Advance directives in dementia: issues of validity and effectiveness.
International Psychogeriatrics. 2010;22(2):201-8.
19. Dees M, Vernooij-Dassen M, Dekkers W, van Weel C. Unbearable suffering of patients with a request for
euthanasia or physician-assisted suicide: an integrative review. Psycho-Oncology. 2010;19(4):339-52.
20. Hertogh CMPM, de Boer M., Dröes R-M, Eefsting J. Beyond a Dworkinean view on autonomy and advance
directives in dementia. response to open peer commentaries on “Would we rather lose our life than lose our self?
lessons from the Dutch debate on euthanasia for patients with dementia.” American Journal of Bioethics.
2007;7(4):4-6.
21. Hertogh CMPM. The role of advance euthanasia directives as an aid to communication and shared decision-making
in dementia. Journal of Medical Ethics. 2009;35(2):100-3.
22. Mishara BL, Weisstub DN. Premises and evidence in the rhetoric of assisted suicide and euthanasia. International
Journal of Law and Psychiatry. 2013 Sep;36(5-6):427-35.
23. de Beaufort ID, van de Vathorst S. Dementia and assisted suicide and euthanasia. Journal of Neurology.
2016;263(7):1463-7.
24. Woien S. Conflicting preferences and advance directives. American Journal of Bioethics. 2007;7(4):64-5.
25. van Wijngaarden E, Alma M, The A-M. ‘The eyes of others’ are what really matters: The experience of living with
dementia from an insider perspective. PLoS ONE. 2019;14(4):e0214724.
26. Alvargonzález D. Alzheimer’s disease and euthanasia. Journal of Aging Studies. 2012;26(4):377-85.
27. Dresser R. Dworkin on dementia. Elegant theory, questionable policy. The Hastings Center Report. 1995;25(6):32-
8.
28. Jaworska A. Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philosophy and
Public Affairs. 1999;28(2):105-38.
29. Tomlinson E, Stott J. Assisted dying in dementia: a systematic review of the international literature on the attitudes
of health professionals, patients, carers and the public, and the factors associated with these. International Journal
of Geriatric Psychiatry. 2015;30(1):10-20.
30. Bravo G, Rodrigue C, Arcand M, et al. Quebec physicians’ perspectives on medical aid in dying for incompetent
patients with dementia. Canadian Journal of Public Health. 2018;109(5-6):729-39.
31. Bravo G, Rodrigue C, Arcand M, et al. Nurses’ perspectives on whether medical aid in dying should be accessible
to incompetent patients with dementia: findings from a survey conducted in Quebec, Canada. Geriatric Nursing.
2018;39(4):393-9.
32. Bravo G, Rodrigue C, Arcand M, et al. Are informal caregivers of persons with dementia open to extending medical
aid in dying to incompetent patients? findings from a survey conducted in Quebec, Canada. Alzheimer Disease and
Associated Disorders. 2018;32(3):247-54.
33. Bravo G, Trottier L, Rodrigue C, et al. Comparing the attitudes of four groups of stakeholders from Quebec,
Canada, toward extending medical aid in dying to incompetent patients with dementia. International Journal of
Geriatric Psychiatry. 2019; 34(7):1078-86.
34. Daskal F, Hougham G, Sachs G. Physician-assisted suicide: interviews with patients with dementia and their
families. Annals of Long Term Care. 1999;7(8):293-8.
35. Sandelowsk M. What’s in a name? Qualitative description revisited. Research in Nursing & Health. 2010;33(1):77-
84.
36. Folstein MF, Folstein SE, White T, Messer MA. MMSE-2 User’s Manual. Lutz, FL: Psychological Assessment
Resources. 2010
Thériault, Guay & Bravo 2021
Page 77
37. Nasreddine ZS, Phillips NA, Bédirian V, et al. The Montreal Cognitive Assessment, MoCA: a brief screening tool for
mild cognitive impairment. Journal of the American Geriatrics Society. 2005;53(4):695-9.
38. Zanna MP, Rempel JK. Attitudes: A new look at an old concept. In: Bar-Tal D, Kruglanski AW, eds. The Social
Psychology of Knowledge. Cambridge, UK: Cambridge University Press; 1988. p. 315-34.
39. Savoie-Zaic L. Chapitre 12 : L’entrevue semi-dirigé. In: Gauthier, B. Recherche sociale. De la problématique à la
collecte des données. Presses de l’Université du Québec; 2003. p. 293-316.
40. Colorafi KJ, Evans B. Qualitative descriptive methods in health science research. HERD. 2016;9(4):16-25.
41. Paillé P, Mucchielli A. L’analyse qualitative en sciences humaines et sociales. Armand Colin; 2016. (Collection U.
Sciences humaines et sociales).
42. Weller SC, Vickers B, Bernard HR, et al. Open-ended interview questions and saturation. PLoS ONE.
2018;13(6):e0198606.
43. Statistics Canada. National Household Survey (NHS) Profile. 2011.
44. Leger Marketing. L’aide médicale à mourir dans les cas de maladie de type Alzheimer au stade avancé ; L’opinion
des canadiens. Survey report. April 2019.
45. Clarke G, Fistein E, Barclay M, Theimann P, Barclay S, Holland A. Preferences for care towards the end of life
when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great
Britain and the United States. PLoS ONE. 2017;12(4):e0172104.
46. Menzel PT. AEDs are problematic, but Mrs A is a misleading case. Journal of Medical Ethics. 2019;45(2):90-1.
47. Read ST, Toye C, Wynaden D. Experiences and expectations of living with dementia: A qualitative study. Collegian.
2017;24(5):427-32.
48. van Delden JJM. The unfeasibility of requests for euthanasia in advance directives. Journal of Medical Ethics.
2004;30(5):447-51.
49. Wiebe E, Shaw J, Green S, Trouton K, Kelly M. Reasons for requesting medical assistance in dying. Canadian
Family Physician. 2018;64(9):674-9.
50. Seller L, Bouthillier M-È, Fraser V. Situating requests for medical aid in dying within the broader context of end-of-
life care: ethical considerations. Journal of Medical Ethics. 2019;45(2):106-11.
51. Auriemma CL, Nguyen CA, Bronheim R, et al. Stability of end-of-life preferences: a systematic review of the
evidence. JAMA Internal Medicine. 2014;174(7):1085-92.
52. Hertogh CMPM. The misleading simplicity of advance directives. International Psychogeriatrics. 2011;23(4):511-5.
53. de Boer ME, Dröes R-M, Jonker C, Eefsting JA, Hertogh CMPM. Advance directives for euthanasia in dementia: Do
law-based opportunities lead to more euthanasia? Health Policy. 2010;98(2):256-62.
54. Williams N, Dunford C, Knowles A, Warner J. Public attitudes to life-sustaining treatments and euthanasia in
dementia. International Journal of Geriatric Psychiatry. 2007;22(12):1229-34.
55. Tracy SJ. Qualitative quality: eight “big-tent” criteria for excellent qualitative research. Qualitative Inquiry.
2010;16(10):837-51.
56. Morse JM. Critical analysis of strategies for determining rigor in qualitative inquiry. Qualitative Health Research.
2015;25(9):1212-22.
57. Sandelowski M. Rigor or rigor mortis: the problem of rigor in qualitative research revisited. Advances in Nursing
Science. 1993;16(2):1-8.
ResearchGate has not been able to resolve any citations for this publication.
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Background Medical aid in dying (MAiD) was introduced in Quebec in 2015. Quebec clinical guidelines recommend that MAiD be approached as a last resort when other care options are insufficient; however, the law sets no such requirement. To date, little is known about when and how requests for MAiD are situated in the broader context of decision-making in end-of-life care; the timing of MAiD raises potential ethical issues. Methods A retrospective chart review of all MAiD requests between December 2015 and June 2017 at two Quebec hospitals and one long-term care centre was conducted to explore the relationship between routine end-of-life care practices and the timing of MAiD requests. Results Of 80 patients requesting MAiD, 54% (43) received the intervention. The median number of days between the request for MAiD and the patient’s death was 6 days. The majority of palliative care consults (32%) came less than 7 days prior to the MAiD request and in another 25% of cases occurred the day of or after MAiD was requested. 35% of patients had no level of intervention form, or it was documented as 1 or 2 (prolongation of life remains a priority) at the time of the MAiD request and 19% were receiving life-prolonging interventions. Interpretation We highlight ethical considerations relating to the timing of MAiD requests within the broader context of end-of-life care. Whether or not MAiD is conceptualised as morally distinct from other end-of-life options is likely to influence clinicians’ approach to requests for MAiD as well as the ethical importance of our findings. We suggest that in the wake of the 2015 legislation, requests for MAiD have not always appeared to come after an exploration of other options as professional practice guidelines recommend.
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Objectives To elicit Quebec physicians’ attitudes towards extending medical aid in dying (MAiD) to incompetent patients and to compare the attitudes of family physicians to those of other medical specialists. Methods We conducted a postal survey among physicians caring for patients with dementia. We used hypothetical vignettes to elicit their attitudes towards MAiD and continuous deep sedation (CDS) to relieve suffering at end of life. Two patients were depicted in the vignettes: one with cancer eligible for MAiD and one with dementia. The generalized estimating equation approach was used to investigate factors associated with attitudes, including the stage of the illness (advanced vs terminal dementia) and the presence or absence of a prior written request. Results A total of 136 physicians out of 653 returned the questionnaire. Physicians favoured CDS over MAiD for relieving suffering in the cancer vignette (93% vs 79%; p = 0.002). In advanced dementia, 45% of physicians supported giving the patient access to MAiD with a written request and 14% without such request. At the terminal stage of dementia, these proportions increased to 71% and 43%, respectively (p < 0.001), reaching 79% and 52% among family physicians. Support for CDS in terminal dementia was lower than in end-stage cancer (68% vs 93%; p < 0.001) and equal to MAiD with a written request (68% vs 71%; p = 0.623). Conclusion Many Quebec physicians support extending MAiD to incompetent patients with dementia to relieve suffering at the terminal stage. This finding will inform current deliberations as to whether MAiD should be extended to these patients.
Article
We conducted a survey in a random sample of 514 Quebec nurses caring for the elderly to assess their attitudes towards extending medical aid in dying to incompetent patients and to explore associated factors. Attitudes were measured using clinical vignettes featuring a hypothetical patient with Alzheimer disease. Vignettes varied according to the stage of the disease (advanced or terminal) and the presence or absence of a written request. Of the 291 respondents, 83.5% agreed with the current legislation that allows physicians to administer aid in dying to competent patients who are at the end of life and suffer unbearably. A similar proportion (83%, p = 0.871) were in favor of extending medical aid in dying to incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity.