Capacity assessment for euthanasia in dementia: A qualitative study of 60 Dutch cases

The number of patients with dementia who are granted euthanasia or assisted suicide (EAS) increases yearly in the Netherlands. By law, patients need to be decisionally competent or have an advance directive. Assessment of decisional capacity is challenging as dementia progressively affects cognitive performance. We aimed to assess qualitatively which factors, and how, influence the judgment of decisional capacity in EAS cases with dementia.

We performed a qualitative study of 60 dementia EAS case summaries published by the Dutch regional euthanasia review committees between 2012 and 2021. Included reports were evaluated using the grounded theory approach. All quotes related to decisional capacity were coded independently by two researchers and compared in an iterative process to formulate an overarching framework on the assessment of decisional capacity. We selected 20 patients who had an advance directive and were judged to be decisionally compromised, as well as a selection of 40 EAS cases judged to be decisionally competent, half of which also had an advance directive (purposive sampling).

Decisional capacity was present in every case report. Predefined, external criteria were rarely described explicitly, but physicians indirectly referred to the (cognitive) criteria set by Appelbaum and Grisso. Whether the thresholds for these dimensional criteria were met was influenced by six supporting factors (level of communication, psychiatric comorbidity, personality, presence of an advance directive, consistency of the request, and, finally, the patient-physician relationship) that also directly contributed to the judgment of capacity. The involved physicians and executed investigations were the two contextual factors providing a background.

Decisional capacity regarding euthanasia is a multidimensional construct, often implicitly assessed and influenced by supporting and contextual factors. The subjectivity of the final judgment poses ethical and legal issues and argues for continuous quality improvement processes.