Euthanasia on their mind: a qualitative analysis of spontaneous expressions of people with young-onset dementia and their family caregivers.

Abstract

Introduction:Previous research showed that people with young-onset dementia and their family caregivers spontaneously addressed the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may provide innovative insights to inform the evolving physician assisted dying legislation worldwide. This study aimed to identify what people with young-onset dementia and their family caregivers spontaneously expressed regarding (communication about) euthanasia when discussing the topic of advance care planning.Methods:A secondary qualitative analysis was conducted, through the method of constant comparative analysis on semi-structured interviews. We included 10 people with young-onset dementia and 25 family caregivers in Flanders, Belgium.Results:Respondents described similar contexts for discussions about euthanasia: the topic arose at several key moments, usually with informal caregivers, and was motivated by patients considering the impact of disease progression both for themselves, thereby mainly wanting to avoid decline and maintain dignity, and their loved ones. Family caregivers paid considerable attention to the legality of euthanasia in dementia, specifically with regard to cognitive capacity, and elaborated on the difficulties and emotional impact of discussing euthanasia.Conclusions:Considerations of people with young-onset dementia towards euthanasia appeared rooted in personal unbearable suffering and in expected interpersonal and societal consequences of their condition. Negative social framing of young-onset dementia might contribute to the livelihood of euthanasia in respondents’ thoughts. The incorporation of euthanasia as a legal end-of-life option was mirrored in its incorporation in patients’ and family caregivers’ thought framework.