The ethics of euthanasia in dementia: A qualitative content analysis of case summaries (2012-2020).

Background: The practice of euthanasia in dementia has thus far been described both in terms of its empirical patient characteristics and its ethical questions. However, 40 new cases have been published since the last study.

Methods: A qualitative content analysis of all 111 Dutch case summaries of euthanasia in dementia patients between 2012 and 2020, selected from the total of 1117 cases published by the Regional Euthanasia Review Committees (RTE). Our initial analytical framework consists of six due care criteria and five ethical principles.

Results: 111 case summaries were analyzed, from which we distilled seven recurring ethical questions: (1) How voluntary is a request? (2) Can an incapacitated patient make well-considered requests? (3) What constitutes "unbearable suffering"? (4) What if the unbearableness of suffering solely consists of "the absence of any prospect of improvement"? (5) What if a euthanasia request is meant to prevent future suffering (now for then)? (6) How (well) can a patient with cognitive limitations be informed? (7) What are "reasonable alternatives" and what if patients decline available alternatives?

Conclusions: Beyond these questions, however, we also see some serious challenges for the future: (a) narrowing the gap between perceived and real nursing home quality, since many advance euthanasia directives refer to nursing homes as sources of unbearable suffering; (b) making information to incompetent patients and their relatives about end of life options more tailor made, since it is questionable whether patients with dementia currently understand all of the euthanasia procedure; (c) involving patients' own physician as long as possible in a euthanasia request. Training may help physicians to deal better with euthanasia requests by patients suffering from dementia; (d) longitudinal research is required that encompasses all dementia euthanasia cases, not only those selected by the RTE.