Hillel A D, Miller R M
Adv Exp Med Biol. 1987;209:201-21. doi: 10.1007/978-1-4684-5302-7_32.
The bulbar symptoms of ALS include difficulty with the management of swallowing, saliva, aspiration, and communication. These symptoms originate from the disability of the oropharyngeal muscles and actually represent varying degrees of severity of a single problem. The management of these symptoms requires the concerted effort of a rehabilitation team, which should include a surgeon, speech pathologist, neurologist, psychosocial worker, and dietitian. Early education of the patient and patient's family greatly facilitates successful management of bulbar symptoms. Early recognition of the signs of dysphagia, aspiration, and communicative disability are important in order to provide solutions before severe and possibly life-threatening debilitation occurs. The treatments and techniques presented in this chapter must be applied to each patient on an individual basis. The moral and social decisions regarding the providing or withholding of treatment to ALS patients are difficult ones. It is important, however, to realize that management decisions of ALS patients must deal not only with the quantity of life but also the quality of life. This distinction often falls into a 'gray zone' with management of bulbar symptoms since swallowing difficulties are life-threatening as well as uncomfortable. One of the difficulties that we present ourselves as health care providers in ALS is that, more often than not, our patient is in a noncommunicative position and cannot contribute to treatment decisions. If careful and aggressive care is taken to preserve the communicative abilities of our patients, the difficult situation of making decisions based on the family's inclinations and our own inclinations can be avoided. When we are confronted with a decision to maintain or cease support for a patient, the moral and emotional issues that present can be overwhelming. However, the patient's input, if it were direct and included the ability to express complex thoughts, could often provide the information necessary to make the decisions more clear.
肌萎缩侧索硬化症（ALS）的延髓症状包括吞咽、唾液管理、误吸及沟通困难。这些症状源于口咽肌肉功能障碍，实际上代表了同一问题的不同严重程度。这些症状的管理需要康复团队的协同努力，团队成员应包括外科医生、言语病理学家、神经科医生、心理社会工作者和营养师。对患者及其家属进行早期教育，极大地有助于成功管理延髓症状。早期识别吞咽困难、误吸及沟通障碍的迹象很重要，以便在严重且可能危及生命的衰弱情况发生之前提供解决方案。本章介绍的治疗方法和技术必须根据每个患者的具体情况应用。关于为ALS患者提供或停止治疗的道德和社会决策很困难。然而，重要的是要认识到，ALS患者的管理决策不仅要考虑生命的数量，还要考虑生活的质量。由于吞咽困难既危及生命又让人不适，在管理延髓症状时，这种区别往往会陷入“灰色地带”。作为ALS医疗服务提供者，我们面临的一个困难是，我们的患者往往无法交流，无法参与治疗决策。如果我们谨慎且积极地采取措施保护患者的沟通能力，就可以避免基于家属意愿和我们自己意愿做出决策的困境。当我们面临维持或停止对患者支持的决定时，出现的道德和情感问题可能会让人难以承受。然而，如果患者能够直接表达意见，包括表达复杂想法的能力，往往可以提供做出更明确决策所需的信息。
