Bringing up the end of life and euthanasia: A mixed method study on consultations with people with dementia and their families in the hospital setting

Background: Discussing end-of-life care with people with dementia and their family soon after diagnosis is a crucial aspect of professional care. Research in the hospital setting is scarce.

Aim: To investigate how often end-of-life issues and euthanasia are discussed during hospital consultations with people with dementia; identify who initiates these conversations; explore physicians’ perceptions of their own role in these conversations compared to actual practice and physicians’ views on the family’s involvement.

Design: Convergent mixed-method study.

Setting/participant: 11 Dutch hospitals involving 31 physicians.

Results: End-of-life topics were discussed in 36% of consultations (in regional hospitals, 53%; in academic settings, 27%), and predominantly during diagnostic consultations (54%). Euthanasia was discussed in 21%, often initiated by the patient (60%) or the family (31%). Family members were present in 96% of consultations. We identified 3 themes. (1) Struggle to initiate end-of-life conversations. Physicians acknowledged the importance of timely end-of-life discussions, but struggled to initiate those discussions. Introducing euthanasia is considered undesirable. (2) Appreciation and concern about family input. Physicians’ experiences of family involvement were positive in both end-of-life and euthanasia conversations, yet the latter also raised concerns. (3) Moral concerns regarding euthanasia for dementia. Physicians emphasized the importance of raising patient awareness about other end-of-life options.

Conclusions and relevance: End-of-life conversations with patients with dementia are not standard practice in the hospital setting. The availability of euthanasia can narrow patients’ perspective on other end-of-life options. This hinders physicians from initiating end-of-life conversations and possibly end-of-life decision making and care.