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.