Seeking consensus on dilemmas related to euthanasia in dementia based on an advance directive: a Delphi study from a medical, ethical and legal perspective

Abstract

Euthanasia in dementia based on advance euthanasia directives (AEDs) is possible within the Dutch Euthanasia law. Yet, physicians struggle with the responsibility of interpreting the law's open norms in cases of advanced dementia, which includes the fulfilment of the due care criteria. This Delphi study aims to analyse arguments and seek consensus from medical, ethical and legal perspectives on ethical dilemmas in such cases. Thirty participants, equally divided in expertise, took part in a three-round Delphi with a total of 11 statements on ethical dilemmas. Despite differences in opinions and argumentations between panellists, consensus was reached on seven statements regarding different topics. Consensus was reached that the (behavioural) expressions of a person with dementia should be considered throughout the progression of decision-making disabilities. In such cases, a wish to live should be prioritised over an AED. Although substitute decision-making is not an option in case of euthanasia requests, both people around the person with dementia as well as their AED can be supportive in the decision-making process. Advance directives with formulations such as 'if I have to admitted to a nursing home, then I want euthanasia' are found to be infeasible. At all times, it is important to pay attention to alternatives to euthanasia, which includes following existing guidelines on problem behaviour. Physicians may benefit from the arguments pertaining to dilemmas encountered and the fulfilment of the due care criteria to either justify their decisions in euthanasia cases based on an AED, or to support decisions to refrain from euthanasia.

Keywords: Advance Directives; Decision Making; Dementia; Ethics- Medical; Euthanasia.

Figure 1. Flowchart statement consensus over Delphi rounds*.: * For all statements with consensus both a summary and full arguments were provided in the next round. In case arguments pointed in the same direction as those of the previous round, statements were not re-scored in the next round.