What do people write about after filling out a survey on extending assistance in dying to incompetent patients with dementia?

Abstract

AbstractBackgroundIn December 2015, the Canadian province of Quebec legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. Like the rest of Canada, Quebec is considering extending the legislation to incompetent patients under certain conditions not yet specified. With the objective of informing policy developments in this sensitive area, we recently conducted a province‐wide postal survey to assess stakeholders’ attitudes toward giving incompetent patients with dementia access to MAID in some circumstances. Objective: To describe the comments respondents left at the end of the questionnaire.MethodThe questionnaire was mailed to 2,125 randomly selected representatives of four stakeholder groups: adults 65 and over presumed free of cognitive impairment, informal caregivers of persons with dementia, and nurses and physicians who were caring for patients with dementia at the time of the survey. A total of 1,050 questionnaires were returned (49.4%), of which 420 (40%) included comments. These ranged from a few words to several pages of free text. Comments were independently coded by the two authors into themes, topics and subtopics.ResultSeven major themes were identified, under which a total of 1,148 units were classified. Respondents wrote (1) about themselves (297 units), (2) the survey and questionnaire (204), (3) patients with dementia (235), (4) their informal caregivers (97), (5) the health care system (75), (6) the MAID legislation (207), and (7) society in general (33). Each theme comprises between two and five topics. Topics include, for instance, the respondent’s personal values and beliefs, informal caregivers’ difficulty in making end‐of‐life decisions for a loved one, and health care professionals’ lack of training in caring for patients dying with dementia. Theme 6, on the MAID legislation, includes two topics (the current legislation and its extension), the second of which was subdivided into five subtopics for greater refinement: preferred alternatives to MAID, fears should it be extended to incompetent patients, advanced requests, anticipated difficulties in providing MAID to incompetent patients, and eligibility criteria.ConclusionIn their comments, respondents raised several challenges associated with the possible expansion of MAID to incompetent patients that need attention.