医学
肌萎缩侧索硬化
生活质量(医疗保健)
重症监护医学
多学科方法
疾病
预先护理计划
缓和医疗
制度化
精神科
护理部
内科学
社会科学
社会学
作者
Anne-Chantal Héritier-Barras,Dan Adler,Ferfoglia Iancu,Bara Ricou,Yvan Gasche,Igor Leuchter,Samia Hurst,Monica Escher-Imhof,Pierre Pollak,JP Janssens
出处
期刊:Schweizerische Medizinische Wochenschrift
日期:2013-08-07
被引量:50
标识
DOI:10.4414/smw.2013.13830
摘要
QUESTION UNDER STUDY: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with a poor prognosis. Survival and quality of life of ALS patients have improved through the implementation of multidisciplinary approaches, the use of percutaneous gastrostomy and of noninvasive (NIV) or invasive ventilation. The question of whether or not to propose invasive ventilation (by tracheostomy: TPPV) to ALS patients remains a matter of debate. METHODS: The study reviews the medical literature, the practice in three Swiss and two large French ALS expert centres and reports the results of a workgroup on invasive ventilation in ALS. RESULTS: Improved management of secretions and use of different interfaces allows NIV to be used 24-hours-a-day for prolonged periods, thus avoiding TPPV in many cases. TPPV is frequently initiated in emergency situations with lack of prior informed consent. TPPV appears associated with a lesser quality of life and a higher risk of institutionalisation than NIV. The high burden placed on caregivers who manage ALS patients is a major problem with a clear impact on their quality of life. CONCLUSIONS: Current practice in Switzerland and France tends to discourage the use of TPPV in ALS. Fear of a "locked-in syndrome", the high burden placed on caregivers, and unmasking cognitive disorders occurring in the evolution of ALS are some of the caveats when considering TPPV. Most decisions about TPPV are taken in emergency situations in the absence of advance directives. One exception is that of young motivated patients with predominantly bulbar disease who "fail" NIV.
科研通智能强力驱动
Strongly Powered by AbleSci AI