漸凍人病人接受安寧療護之個案報告

Palliative Care for Amyotrophic Lateral Sclerosis Patients: A Case Report

胡伊婷(I-Ting Hu) ； 潘湘如(Hsiang-Ju Pan) ； 陳如意(Ru-Yih Chen)

《安寧療護雜誌》 24卷2期 (2020/06) Pp. 153-163

https://doi.org/10.6537/TJHPC.202006_24(2).05

摘要

肌萎縮性脊髓側索硬化症（ALS）為一漸進性神經退化疾病，隨著病程進展，病人為無力、疼痛、呼吸困難等眾多症狀所擾，而透過安寧療護的介入陪伴病人，不僅協助保有生活品質、也得到身心靈全面的照護。然而此類運動神經元疾病對安寧團隊而言是一大挑戰，不僅症狀難以控制，也時常面臨各式各樣的倫理困境。本文透過本院照護一位ALS末期未插管接受呼吸器治療病人的經驗，分享安寧照護可能面臨的難題，並整理目前文獻提供之建議。

關鍵字

漸凍人 ； 安寧照護 ； 緩和治療 ； 肌萎縮性脊髓側索硬化症

並列摘要

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease. As the disease progresses, the patients are often troubled by numerous symptoms including pain, weakness and dyspnea, just to name a few. With the involvement of hospice care, we aim to achieve better quality of life for the patients and to offer holistic care that included bio-psycho-social aspects. However, motor neuron diseases as such are a big challenge to hospice care providers. Not only the symptoms are difficult to control, but also we are frequently encountered with many ethical issues. Through the experience of providing care to a terminally-ill ALS patient who did not undergo mechanical ventilation therapy in our hospital, this article aims to point out some of the many difficulties we may face while caring for ALS patients, and to outline suggestions given by current literature.

並列關鍵字

ALS ； hospice care ； palliative care ； amyotrophic lateral sclerosis

參考文獻

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Chio A, Logroscino G, Traynor BJ, et al. Global epidemiology of amyotrophic lateral sclerosis: a systematic review of the published literature. Neuroepidemiology 2013; 41: 118-130.

Mehta P, Kaye W, Raymond J, et al. Prevalence of Amyotrophic Lateral Sclerosis - United States, 2015. MMWR Morb Mortal Wkly Rep 2018; 67: 1285-1289.

Worms PM. The epidemiology of motor neuron diseases: a review of recent studies. J Neurol Sci 2001; 191: 3-9.

Sutedja NA, Veldink JH, Fischer K, et al. Lifetime occupation, education, smoking, and risk of ALS. Neurology 2007; 69: 1508-1514.