Department of Hematology, Oncology and Palliative Medicine, Medical Center Bad Hersfeld, Bad Hersfeld, Germany.
Department of Palliative Medicine, University Hospital Heidelberg, Heidelberg, Germany.
BMC Neurol. 2022 Apr 30;22(1):161. doi: 10.1186/s12883-022-02681-7.
Palliative sedation has become widely accepted as a method to alleviate refractory symptoms in terminally ill patients. Controversies regarding this topic especially concern the use of palliative sedation for psychological symptoms, the use in patients who are not imminently dying and the simultaneous withdrawal of life-sustaining measures. Amyotrophic lateral sclerosis (ALS) is characterized by symptoms including muscle weakness, dysphagia, dysarthria, muscle spasms and progressive respiratory insufficiency. Due to these characteristic symptoms, palliative sedation might be considered to be necessary to alleviate refractory suffering in ALS patients. However, palliative sedation in ALS is only rarely discussed in current medical literature and guidelines.
A questionnaire survey was conducted among neurologists and palliative care practitioners in Germany. The participants were asked to evaluate the use of palliative sedation in different situations.
Two hundred and ninety-six completed questionnaires were analyzed. The results suggest high levels of support for the use of palliative sedation in ALS patients. 42% of the participants stated that they had already used palliative sedation in the treatment of ALS patients. Acceptance of palliative sedation was higher in case of physical symptoms than in case of psychological symptoms. Refusal of artificial nutrition did not lead to a lower acceptance of palliative sedation. Doctors with specialist training in palliative care had already used palliative sedation in ALS patients more often and they were more likely to accept palliative sedation in different situations than the participants without a background in palliative care.
Our survey showed that palliative sedation in ALS is widely accepted by the attending doctors. In case of psychological symptoms, palliative sedation is looked at with more concern than in case of physical symptoms. The refusal of artificial nutrition does not result in a decreased acceptance of palliative sedation. Doctors with specialist training in palliative care are more likely to approve of palliative sedation in ALS.
姑息性镇静已被广泛接受，作为缓解终末期患者难治性症状的一种方法。关于这个话题的争议，特别是涉及到姑息性镇静用于心理症状、用于即将死亡的患者以及同时停止生命支持措施的情况。肌萎缩侧索硬化症（ALS）的特征是肌肉无力、吞咽困难、构音障碍、肌肉痉挛和进行性呼吸功能不全等症状。由于这些特征性症状，姑息性镇静可能被认为是缓解 ALS 患者难治性痛苦的必要手段。然而，姑息性镇静在 ALS 中的应用在当前的医学文献和指南中很少讨论。
对德国的神经科医生和姑息治疗医生进行了问卷调查。要求参与者评估姑息性镇静在不同情况下的应用。
分析了 296 份完成的问卷。结果表明，姑息性镇静在 ALS 患者中的应用得到了高度支持。42%的参与者表示他们已经在 ALS 患者的治疗中使用了姑息性镇静。接受姑息性镇静治疗的情况，身体症状比心理症状更常见。拒绝人工营养并不导致姑息性镇静接受率降低。接受过姑息治疗专业培训的医生更经常在 ALS 患者中使用姑息性镇静，并且比没有姑息治疗背景的参与者更有可能在不同情况下接受姑息性镇静。
我们的调查显示，姑息性镇静在 ALS 中的应用得到了主治医生的广泛认可。在心理症状的情况下，姑息性镇静比身体症状更受关注。拒绝人工营养并不导致姑息性镇静接受率降低。接受过姑息治疗专业培训的医生更有可能批准在 ALS 中使用姑息性镇静。
