Objective: In the Netherlands about 20% of all patients with amyotrophic lateral sclerosis (ALS) die from euthanasia or physician assisted suicide. Clinical experience suggests a lower number of requests for hastened death among ALS patients in Germany. To confirm this assumption we studied the attitudes towards life-prolonging therapies and hastened death in German ALS patients.
Methods: A structured telephone interview was performed with the primary caregivers of 128 patients who died from ALS.
Results: 78 of 128 patients were male, the mean duration of disease was 37.6 months; 89 caregivers were spouses, 34 other relatives. In the terminal phase 18% of patients were under the care of a specialist palliative home care service, and 44% under the care of a neurologist with training in palliative care. According to the caregivers’ information, 31% of patients had no clear opinion about life-prolonging treatments and euthanasia. 36% of patients wished no life-prolonging treatments. 26% of patients repeatedly wished to die (without asking for assistance) and refused life-prolonging treatments. Ten patients (8%) asked repeatedly for active euthanasia. From this group one patient committed suicide with potassium cyanide. Three patients obtained potassium cyanide without using it, and three patients attempted suicide by other means. Among these ten patients, seven had a PEG, two were tracheostomised and seven patients were under palliative treatment.
Conclusions: In spite of a possible bias due to retrospective and caregivergenerated data, in this cohort a significant number of requests for hastened death was recorded, despite an overall good availability of palliative care.