DEALING WITH END OF LIFE DECISIONS OF VEN TILATED PATIENTS WITH AMYOTROPHIC-LATERAL-SCLEROSIS

Background: End of life decisions of patients with amyotrophic lateral sclerosis and respiratory failure are influenced by several environme ntal factors. Patients and Methods: We describe the course of disease and decision making of four of these patients. Results: Most decisions have been inconsistent and were seen to be depending on actual situat ions. Main factors were: 1. preclinically (before respiratory failure) medical information, 2. during respirator dependency in the hospital' s intensive care unit the clinical setting and the individual perspect ive depending on the patient's private situation, 3. at home ventilati on the family's situation and conflicts. Especially the patients' requ ests for disconnection from the respirator overtaxed their carers capa cities. Conclusion: We conclude that there is need for professional ps ychosocial intervention for the patients and their families.