Managing life and death wishes of invasively ventilated amyotrophic lateral sclerosis patients
Winterholler, M.; Erbguth, F.; Rechlin, T.; Neundörfer, B.
Medizinische Klinik 92(Suppl 1): 90-92
1997
ISSN/ISBN: 0723-5003 PMID: 9235485 Document Number: 479343
Find of life decisions of patients with amyotrophic lateral sclerosis and respiratory failure are influenced by several environmental factors. We describe the course of disease and decision making of four of these patients. Most decisions have been inconsistent and were seen to be depending on actual situations. 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 perspective depending on the patient's private situation, 3. at home ventilation the family's situation and conflicts. Especially the patients requests for disconnection from the respirator overtaxed their carers capacities. We conclude that there is need for professional psychosocial intervention for the patients and their families.