Miller J R, Colbert A P, Schock N C
Department of Rehabilitation Medicine, Tufts University School of Medicine, Boston, MA.
Dev Med Child Neurol. 1988 Apr;30(2):200-7. doi: 10.1111/j.1469-8749.1988.tb04751.x.
The question of extending the lives of patients with progressive neuromuscular disease by means of ventilator support is controversial. It has been documented that ventilators can prolong the lives of patients with Duchenne muscular dystrophy by between two and 25 years, but few studies have assessed the effects of their use on individual or family functioning, or the quality of survival. A sample of patients with progressive disease and families living in the community was surveyed to assess these effects. Most of the sample were satisfied with their decision to extend life with the ventilator, but they found the experience significantly stressful in the home. Both patients and families believed their health-care team could have met their needs more comprehensively. Recommendations are made for health-care professionals working with patients with late-stage neuromuscular disease who need to use ventilators.
通过呼吸机支持来延长进行性神经肌肉疾病患者的生命这一问题存在争议。有文献记载，呼吸机可使杜氏肌营养不良症患者的生命延长两至二十五年，但很少有研究评估使用呼吸机对个体或家庭功能以及生存质量的影响。对一组患有进行性疾病的患者及其居住在社区中的家庭进行了调查，以评估这些影响。该样本中的大多数人对使用呼吸机延长生命的决定感到满意，但他们发现在家中的经历压力很大。患者和家庭都认为他们的医疗团队本可以更全面地满足他们的需求。针对为需要使用呼吸机的晚期神经肌肉疾病患者提供护理的医疗专业人员提出了建议。
