Euthanasie en hulp bij zelfdoding bij patiënten met amyotrofische laterale sclerose in Nederland

Objective. To determine the incidence of euthanasia and physician-assisted suicide and the possible determining factors in patients with amyotrophic lateral sclerosis (ALS). Design. Retrospective. Method. The family physicians of 279 Dutch patients who fulfilled the criteria for possible, probable or definite ALS, who were known in the Utrecht University Medical Centre or the Academic Medical Centre in Amsterdam, the Netherlands, and who had died in the period I994-I998 were asked to fill out a validated questionnaire about the various medical end-of-life decisions that had been taken and their possible clinical, care-related and social determinants. Of 24I eligible physicians, 203 returned the questionnaire (84%). Results. Of the 203 patients, 35 (I7%) requested and received euthanasia and 6 (3%) died as a result of physician-assisted suicide. The choice of euthanasia or physician-assisted suicide was not associated with any specific clinical, care-related or social factor. The family physicians estimated that religion was less important for these 4I patients. Disability before death was significantly more severe in patients who died as a result of euthanasia and the patients who died as a result of physician-assisted suicide were in an earlier stage of the disease than patients who died of other causes. An additional 48 patients (24%) received palliative treatment, which may have shortened their lives. Conclusion. Of the patients with ALS about whom information could be obtained, 20% had died after euthanasia or physician-assisted suicide. There was no reason to assume that an above-average degree of suffering or a lack of care had led to the active termination of life.