People with young-onset dementia and their family caregivers discussing euthanasia: A qualitative analysis of their considerations

Abstract

ObjectivesResearch showed that people with young-onset dementia and their family caregivers raised the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may inform the evolving landscape of physician assisted dying. This study aimed to explore the considerations that people with young-onset dementia and their family caregivers expressed on euthanasia. MethodsA secondary qualitative analysis on interviews with 10 Belgian people with young-onset dementia and 25 family caregivers, using constant comparative analysis. ResultsRespondents described similar contexts in which euthanasia had been discussed: the topic arose at ‘key’ moments, mostly with family caregivers, and was motivated by patients considering the impact of disease progression for themselves and their loved-ones. Caregivers shared opinions on the euthanasia law and discussed the emotional impact of discussing euthanasia. ConclusionsConsiderations of people with young-onset dementia towards euthanasia appear rooted in personal, as well as in anticipated interpersonal and societal suffering. The negative image associated with dementia and dementia care seemed to influence people’s expectations for and thoughts on the future. Practice implicationsPatient-physician communication should include detangling motives for euthanasia requests, openly discussing fears and reflecting on prognosis.