Winterholler M, Erbguth F, Rechlin T, Neundörfer B
Neurologische Klinik, Friedrich-Alexander Universität Erlangen-Nürnberg.
Med Klin (Munich). 1997 Apr 28;92 Suppl 1:90-2.
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.
肌萎缩侧索硬化症合并呼吸衰竭患者的生活决策受多种环境因素影响。
我们描述了其中4例患者的疾病进程及决策过程。
大多数决策并不一致，且似乎取决于实际情况。主要因素包括：1.临床前期（呼吸衰竭前）的医疗信息；2.在医院重症监护病房依赖呼吸机期间的临床环境以及取决于患者个人情况的个人观点；3.在家使用呼吸机时的家庭情况及冲突。尤其是患者要求停止使用呼吸机的请求，超出了其护理人员的能力范围。
我们得出结论，需要对患者及其家属进行专业的心理社会干预。
