a Palliative Care Team, Department of Psychosomatic Medicine and Psychotherapy, Klinikum rechts der Isar , Technical University Munich , Munich , Germany.
b Palliative and Supportive Care Service, Centre Hospitalier Universitaire Vaudois (CHUV) , University of Lausanne , Lausanne , Switzerland.
Amyotroph Lateral Scler Frontotemporal Degener. 2019 Feb;20(1-2):74-81. doi: 10.1080/21678421.2018.1536154. Epub 2019 Feb 21.
This study aims (1) to assess physicians' attitudes toward different palliative end-of-life (EOL) practices in amyotrophic lateral sclerosis (ALS) care, including forgoing artificial nutrition and hydration (FANH), continuous sedation until death (CSD), and withdrawing invasive ventilation (WIV), and toward physician-assisted dying (PAD) including physician-assisted suicide and euthanasia and (2) to explore variables influencing these attitudes.
We used two clinical vignettes depicting ALS patients in different stages of their disease progression to assess the influence of suffering (physical/psycho-existential) on attitudes toward WIV and the influence of suffering and prognosis (short-term/long-term) on attitudes toward FANH, CSD, and PAD.
50 physicians from European ALS centers and neurological departments completed our survey. Short-term prognosis had a positive impact on attitudes toward offering FANH (p = 0.014) and CSD (p = 0.048) as well as on attitudes toward performing CSD (p = 0.036) and euthanasia (p = 0.023). Predominantly psycho-existential suffering was associated with a more favorable attitude toward WIV but influenced attitudes toward performing CSD negatively. Regression analysis showed that religiosity was associated with more reluctant attitudes toward palliative EOL practices and PAD, whereas training in palliative care was associated with more favorable attitudes toward palliative EOL practices only.
ALS physicians seem to acknowledge psycho-existential suffering as a highly acceptable motive for WIV but not CSD. Physicians appear to be comfortable with responding to the patient's requests, but more reluctant to assume a proactive role in the decision-making process. Palliative care training may support ALS physicians in these challenging situations.
本研究旨在（1）评估医师对肌萎缩侧索硬化症（ALS）治疗中不同姑息治疗终末期（EOL）实践的态度，包括拒绝人工营养和水合（FANH）、持续镇静直至死亡（CSD）以及撤回有创通气（WIV），以及对医师辅助自杀和安乐死的医师辅助死亡（PAD）的态度；（2）探讨影响这些态度的变量。
我们使用两个临床病例描述来评估 ALS 患者在疾病进展的不同阶段，以评估痛苦（身体/心理-存在）对 WIV 态度的影响，以及痛苦和预后（短期/长期）对 FANH、CSD 和 PAD 态度的影响。
来自欧洲 ALS 中心和神经科的 50 名医生完成了我们的调查。短期预后对提供 FANH（p=0.014）和 CSD（p=0.048）以及对进行 CSD（p=0.036）和安乐死（p=0.023）的态度有积极影响。主要是心理存在的痛苦与对 WIV 的更有利态度相关，但对进行 CSD 的态度产生负面影响。回归分析表明，宗教信仰与对姑息治疗 EOL 实践和 PAD 的更不情愿态度相关，而姑息治疗培训仅与对姑息治疗 EOL 实践的更有利态度相关。
ALS 医生似乎承认心理存在的痛苦是 WIV 的一个可接受的动机，但不是 CSD。医生似乎对回应患者的要求感到满意，但更不愿意在决策过程中发挥积极作用。姑息治疗培训可能会在这些具有挑战性的情况下支持 ALS 医生。
