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題 名 | The Management of Patients with Advanced Motor Neuron Disease=末期運動神經元疾病病人的處置:著重安寧緩和觀點分析 |
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作 者 | 吳彬源; | 書刊名 | 中華醫學雜誌 |
卷 期 | 61:3 民87.03 |
頁 次 | 頁141-145 |
分類號 | 415.827 |
關鍵詞 | 安寧醫療; 運動神經元疾病; 緩和醫療; 生活品質; Hospice care; Motor neuron disease; Palliative care; Quality of life; |
語 文 | 英文(English) |
中文摘要 | 背景:目前對運動神經元疾病並無特殊治療法,而安寧緩和醫療可增進病人的生活品質,減少併發症。然而這種醫療方式在國內很少討論。 方法:本研究追溯1986年3月至1996年4月之間,主要死因為運動神經元疾病之臺北榮總病人,共23人,針對病人特性、症狀及其緩解和維持病人生命之措施,加以評估。 結果:共17位男性和6位女性病人,好發年齡50-60歲,症狀出現至診斷確立需時為2至36月,中值為9個月;發病至死亡為7至99個月,中值為36個月。需應用呼吸器的共17位病人,用了2天至84個月,中值為6個月。12人接受了心肺復甦術,其中兩人成功但呈植物人狀態。19位有吞嚥因難,其中17人插鼻胃管,1人接受胃造口手術,1位接受攪狀軟骨咽喉肌切除術但失敗。18位有頸、軀體、或四肢疼痛,但無人接受過嗎啡治療。在復健方面:兩人接受頸圈支持,兩人接受運動訓練,但沒人接受過電子助語器。主要死因為呼吸衰竭與敗血症。無人接受過居家護理。 結論:運動神經元疾病使病人逐漸衰弱而漸趨死亡。症狀的適當緩解和家屬哀傷的減輕並不容易。醫師應儘早提供人工灌食、人工呼吸器,和心肺復甦術,尊重病人的自主性,這需要現代化安寧緩和醫療的觀念和團隊的合作。 |
英文摘要 | BACKGROUND: There is no specific treatment for motor neuron disease (MND) except hospice or palliative care to improve patients' quality of life and decrease complications. This topic is seldom discussed in Taiwan. METHODS: A retrospective study was conducted of patients with terminal MND who were treated and died at the Veterans General Hospital-Taipei from March 1986 through April 1996. Patients' characteristics, management, length of survival and cause of death were analyzed. RESULTS: Twenty-three patients (M/F, 17/6) were included. The median age of onset was 59 years (range, 24-69). The median interval from onset of symptoms to diagnosis was nine months (range, 2-36). Seventeen patients received mechanical ventilation for an average median of six months. Nineteen patients had dysphagia, 17 received long-term nasogastric tube feeding, one had gastrostomy and one was treated with cricopharyngeal myotomy. Pain over the neck, trunk or limbs was reported by 18 patients; none received narcotics. Only two patients received respiratory exercise training and two had a cervical collar for stabilization. Electronic communication aids were not available. The median survival from onset of symptoms was 36 months (range, 7-99). The causes of death included sepsis (n = 13), respiratory failure (n=7), heart disease (n = 2) and MND-related cachexia (n = 1). Cardiopulmonary resuscitation was performed for 12 patients. CONCLUSIONS: In Taiwan, management of patients with advanced MND is mainly hospital-based and most of the effort is focused on life-sustaining. More attention needs to be paid to improvement of the quality of life and dignity of the patient. |
本系統中英文摘要資訊取自各篇刊載內容。