Objective: To study how advance euthanasia directives (AEDs) in dementia are viewed in practice in the Netherlands.
Design: Qualitative study.
Method: In-depth interviews on nine patients with the patients themselves and/or partners and their physicians. The patients were included from a cohort of people with an AED. All interviews were done in 2006. Cases were included with different diagnoses and at different stages of dementia.
Results: Interviewed patients and their relatives had very high expectations of the feasibility of the AED. Interviewed physicians often thought of AEDs as aids in starting up a dialogue about medical decisions at the end of life, but they did not always do this in practice. Most physicians were open to adhering to AEDs in exceptional cases, on condition that the patient obviously suffered, and that communication with the patient to some extent was possible. In this study two cases were found in which adhering to the AED was seriously considered. In one case, fear of legal consequences was the only reason the physician had not adhered to the AED, while it seemed all the requirements of due care could be met. Euthanasia was not carried out in the other patient either. Several physicians mentioned the need for more detailed practical guidelines for the use of AEDs for dementia.
Conclusion: Patients had too high expectations of AEDs. It seemed that in exceptional cases the requirements for due care for euthanasia can be met in patients with dementia with an AED. It seems advisable that more detailed practical guidelines for the use of AEDs in cases of dementia be drawn up, as a first step to more clarity for patients and physicians.