Physicians' Experiences with Demented Patients with Advance Euthanasia Directives in the Netherlands

Objectives: To estimate the incidence of (compliance with) advance euthanasia directives of patients suffering from dementia in the Netherlands and to gain knowledge about the experiences of physicians. Design: Retrospective interview study. Setting: Physicians in the Netherlands. Participants: Four hundred ten physicians. Measurements: Physicians were interviewed about their demented patients who had an advance euthanasia directive. Nursing home physicians were interviewed more extensively. Results: Approximately 2,200 demented patients with an advance euthanasia directive die annually after being treated by a physician who knows about this directive. In 76% of such cases, compliance with the directive was discussed, but euthanasia was seldom performed. In two‐thirds of the cases of demented nursing home patients with an advance euthanasia directive, the physician was able to identify during the course of the disease a situation for which the patient had intended the directive. One‐quarter of the nursing home physicians thought that their most recent patient suffered unbearably to a (very) high degree, and half of them thought that the patient suffered hopelessly to a (very) high degree. In three‐quarters of the cases, the relatives did not want the nursing home physician to comply with the directive, but they did want to respect the patient's wishes by forgoing life‐prolonging treatment, which occurred in approximately 90% of cases. Conclusion: Most nursing home physicians think that the suffering of patients with dementia can be unbearable and hopeless as a consequence of dementia, but most physicians do not consider dementia to be grounds for euthanasia, unless perhaps the patient has an additional illness.