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

Abstract

BackgroundAlzheimer’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.ObjectiveAimed 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.MethodsData 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.ResultsThe 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.ConclusionsThis 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.

Comparing the attitudes of four groups of stakeholders from Quebec, Canada, toward extending medical aid in dying to incompetent patients with dementia

“…24 In brief, we conducted a province-wide postal survey on representative samples of 24 In brief, we conducted a province-wide postal survey on representative samples of…”

“…As detailed in Bravo et al, 24 using nQuery Advisor 7.0, we estimated a priori that 621 older adults, 527 informal caregivers of persons with dementia, 614 nurses, and 653 physicians should be invited to take part in the survey. Less than 2% of data were missing across scenarios GEE analyses were conducted with SAS Proc GENMOD (SAS Institute Inc, Cary, NC), version 9.4.…”

“…The study protocol has been published elsewhere. 24 In brief, we conducted a province-wide postal survey on representative samples of…”

“…GEE results are expressed using odds ratios (ORs) and 95% confidence intervals (CIs). As detailed in Bravo et al, 24 using nQuery Advisor 7.0, we estimated a priori that 621 older adults, 527 informal caregivers of persons with dementia, 614 nurses, and 653 physicians should be invited to take part in the survey.…”

Euthanasia in the case of dementia: a survey among Flemish GPs

“…The questionnaire was based on existing questionnaires with the addition of questions specifically targeting the research question. 3,11 There were nine questions about the doctor's characteristics: two open questions, two multiple-choice questions, and five yes or no questions. Six questions addressed the general idea of euthanasia and were answered with a 5-point Likert scale (from 'strongly agree' to 'strongly disagree').…”