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.

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.

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.

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.

Unbearable suffering is a key criterion in legally granting patients' euthanasia requests in Belgium yet a generally accepted definition of unbearable suffering remains elusive. The ability to understand and assess unbearable suffering is essential, particularly in patients with psychiatric conditions, as the underlying causes of these conditions are not always apparent. To enable research into when and why suffering experiences incite patients with psychiatric conditions to request euthanasia, and to help explore preventive and curative perspectives, the development of an assessment instrument is needed.

To improve the cognitive validity of a large initial item pool used to assess the nature and extent of suffering in patients with psychiatric conditions.

Cognitive validity was established via two rounds of cognitive interviews with patients with psychiatric conditions with (n = 9) and without (n = 5) euthanasia requests.

During the first round of cognitive interviews, a variety of issues relating to content, form and language were reported and aspects that were missing were identified. During the second round, the items that had been amended were perceived as sufficiently easily to understand, sensitive to delicate nuances, comprehensive and easy to answer accurately. Neither research topic nor method were perceived as emotionally strenuous, but instead as positive, relevant, comforting and valuable.

This research resulted in an item pool that covers the concept of suffering more adequately and comprehensively. Further research endeavours should examine potential differences in suffering experiences over time and in patients with psychiatric conditions with and without euthanasia requests. The appreciation patients demonstrated regarding their ability to speak extensively and openly about their suffering and wish to die further supports the need to allow patients to speak freely and honestly during consultations.

None.