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Should medical assistance in dying be extended to incompetent patients with dementia? : research protocol of a survey among four groups of stakeholders from Quebec, Canada

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Abstract
Background: Alzheimer's disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence. Some commentators have argued that MAiD should be accessible to incompetent patients as well, provided appropriate safeguards are in place. Governments of both Quebec and Canada are currently considering whether MAiD should be accessible through written requests made in advance of loss of capacity. Objective: Aimed at informing the societal debate on this sensitive issue, this study will compare stakeholders' attitudes towards expanding MAiD to incompetent patients with dementia, the beliefs underlying stakeholders' attitudes on this issue, and the value they attach to proposed safeguards. This paper describes the study protocol. Methods: Data will be collected via a questionnaire mailed to random samples of community-dwelling seniors, relatives of persons with dementia, physicians, and nurses, all residing in Quebec (targeted sample size of 385 per group). Participants will be recruited through the provincial health insurance database, Alzheimer Societies, and professional associations. Attitudes towards MAiD for incompetent patients with dementia will be elicited through clinical vignettes featuring a patient with Alzheimer's disease for whom MAiD is considered towards the end of the disease trajectory. Vignettes specify the source of the request (from the patient through an advance request or from the patient's substitute decision-maker), manifestations of suffering, and how close the patient is to death. Arguments for or against MAiD are used to elicit the beliefs underlying respondents' attitudes. Results: The survey was launched in September 2016 and is still ongoing. At the time of submission, over 850 respondents have returned the questionnaire, mostly via mail. Conclusions: This study will be the first in Canada to directly compare views on MAiD for incompetent patients with dementia across key stakeholder groups. Our findings will contribute valuable data upon which to base further debate about whether MAiD should be accessible to incompetent patients with dementia, and if so, under what conditions.
Keywords
euthanasia, dementia, decisional incapacity, advance directive, attitude, survey, Canada, OF-LIFE DECISIONS, ADVANCE EUTHANASIA DIRECTIVES, PALLIATIVE CARE, INTERNATIONAL LITERATURE, NURSES ATTITUDES, PHYSICIANS, SUICIDE, END, OPINIONS, NETHERLANDS

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Chicago
Bravo, Gina, Claudie Rodrigue, Vincent Thériault, Marcel Arcand, Jocelyn Downie, Marie-France Dubois, Sharon Kaasalainen, Cees M Hertogh, Sophie Pautex, and Lieve Van den Block. 2017. “Should Medical Assistance in Dying Be Extended to Incompetent Patients with Dementia? : Research Protocol of a Survey Among Four Groups of Stakeholders from Quebec, Canada.” Jmir Research Protocols 6 (11).
APA
Bravo, Gina, Rodrigue, C., Thériault, V., Arcand, M., Downie, J., Dubois, M.-F., Kaasalainen, S., et al. (2017). Should medical assistance in dying be extended to incompetent patients with dementia? : research protocol of a survey among four groups of stakeholders from Quebec, Canada. JMIR RESEARCH PROTOCOLS, 6(11).
Vancouver
1.
Bravo G, Rodrigue C, Thériault V, Arcand M, Downie J, Dubois M-F, et al. Should medical assistance in dying be extended to incompetent patients with dementia? : research protocol of a survey among four groups of stakeholders from Quebec, Canada. JMIR RESEARCH PROTOCOLS. 2017;6(11).
MLA
Bravo, Gina, Claudie Rodrigue, Vincent Thériault, et al. “Should Medical Assistance in Dying Be Extended to Incompetent Patients with Dementia? : Research Protocol of a Survey Among Four Groups of Stakeholders from Quebec, Canada.” JMIR RESEARCH PROTOCOLS 6.11 (2017): n. pag. Print.
@article{8546135,
  abstract     = {Background: Alzheimer's disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence. Some commentators have argued that MAiD should be accessible to incompetent patients as well, provided appropriate safeguards are in place. Governments of both Quebec and Canada are currently considering whether MAiD should be accessible through written requests made in advance of loss of capacity. 
Objective: Aimed at informing the societal debate on this sensitive issue, this study will compare stakeholders' attitudes towards expanding MAiD to incompetent patients with dementia, the beliefs underlying stakeholders' attitudes on this issue, and the value they attach to proposed safeguards. This paper describes the study protocol. 
Methods: Data will be collected via a questionnaire mailed to random samples of community-dwelling seniors, relatives of persons with dementia, physicians, and nurses, all residing in Quebec (targeted sample size of 385 per group). Participants will be recruited through the provincial health insurance database, Alzheimer Societies, and professional associations. Attitudes towards MAiD for incompetent patients with dementia will be elicited through clinical vignettes featuring a patient with Alzheimer's disease for whom MAiD is considered towards the end of the disease trajectory. Vignettes specify the source of the request (from the patient through an advance request or from the patient's substitute decision-maker), manifestations of suffering, and how close the patient is to death. Arguments for or against MAiD are used to elicit the beliefs underlying respondents' attitudes. 
Results: The survey was launched in September 2016 and is still ongoing. At the time of submission, over 850 respondents have returned the questionnaire, mostly via mail. 
Conclusions: This study will be the first in Canada to directly compare views on MAiD for incompetent patients with dementia across key stakeholder groups. Our findings will contribute valuable data upon which to base further debate about whether MAiD should be accessible to incompetent patients with dementia, and if so, under what conditions.},
  articleno    = {e208},
  author       = {Bravo, Gina and Rodrigue, Claudie and Th{\'e}riault, Vincent and Arcand, Marcel and Downie, Jocelyn and Dubois, Marie-France and Kaasalainen, Sharon and Hertogh, Cees M and Pautex, Sophie and Van den Block, Lieve},
  issn         = {1929-0748},
  journal      = {JMIR RESEARCH PROTOCOLS},
  keyword      = {euthanasia,dementia,decisional incapacity,advance directive,attitude,survey,Canada,OF-LIFE DECISIONS,ADVANCE EUTHANASIA DIRECTIVES,PALLIATIVE CARE,INTERNATIONAL LITERATURE,NURSES ATTITUDES,PHYSICIANS,SUICIDE,END,OPINIONS,NETHERLANDS},
  language     = {eng},
  number       = {11},
  pages        = {13},
  title        = {Should medical assistance in dying be extended to incompetent patients with dementia? : research protocol of a survey among four groups of stakeholders from Quebec, Canada},
  url          = {http://dx.doi.org/10.2196/resprot.8118},
  volume       = {6},
  year         = {2017},
}

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