漸凍症照護之臨床指引與倫理議題討

The Clinical Guidelines and Ethical Issues in the Care of Motor Neuron Diseases (ALS)

本文介紹歐洲神經科學協會聯盟與美國神經醫學會所提供之漸凍症息者治療與照護指引，包括病情診斷與告知、跨專業照護、症狀管理、營養管理、呼吸管理、認知能力、溝通、終末照護、照護者負擔、基因檢測及諮詢。此外，亦針對相關照護倫理議題進行探討，包括病人自主與拒絕醫療權、病人之生活品質、預立醫療計畫及預立醫療指示、家庭照顧者負擔。透過本文的介紹與闡述，作者期望能協助漸凍症息者獲得更良好之照護與支持，進一步維護息者及照護者之權益。

In this paper, we introduce the EFNS and AAN guidelines on the treatment and care for patients with motor neuron disease (MND) / amyotrophic lateral sclerosis (ALS), including diagnosing and breaking the news, multidisciplinary care, symptomatic treatment, nutritional and respiratory management, cognitive function, communication, end-of-life care, caregiver burden, genetic testing and counselling. Furthermore, some ethical issues arising from the care for patients with MND / ALS are examined, including patient autonomy and the right to refuse treatment, patient’s quality of life, advance care planning and advance directive, and the burden on family caregivers. It is hoped that our introduction and deliberation could be of help to the improvement of the care and support for the patients with MND / ALS, as well as the rights of both the patients and the caregivers alike.