照顧一位脊髓小腦退化性動作協調障礙個案撤除維生醫療之護理經驗

The Nursing Experience of Withdrawing Life-Sustaining Treatment for A Patient with Spinocerebellar Ataxia

10.6537/TJHPC.2015.20(2).8

陳惠芳(Hui-Fang Chen)；王筱珮(Shiao-Pei Wang)

脊髓小腦退化性動作協調障礙 ； 無效醫療 ； 撤除維生醫療 ； 預期性哀傷 ； spinocerebellar ataxia (SCA) ； medical futility ； withdrawal of life-sustaining treatment ； anticipatory grief

安寧療護雜誌

20卷2期（2015 / 07 / 01）

186 - 197

繁體中文

本文是描述照顧一位脊髓小腦退化性動作協調障礙個案之經驗，其神經學症狀已至吞嚥困難且長期臥床，於住院期間心跳停止，經急救後雖恢復自主性循環，但腦部呈現重度瀰漫性障礙及灌流不足，持續癲癇之發作，家屬希望撤除維生醫療使其善終。護理期間為2014年3月1日至4月14日，筆者對個案及家屬之生理、心理、社會、靈性方面進行評估，匯整出腦組織灌流改變、家屬抉擇衝突、家屬預期性哀傷之護理問題。透過重症照護過程，減緩個案癲癇發作強度，因個案意識無法再回復，與家屬溝通取得撤除維生醫療之共識；照會臨床倫理委員會，以跨團隊合作模式討論並確認個案之維生醫療屬無效醫療，故決定撤除維生裝置；之後運用安寧緩和生命末期照護概念，同理及陪伴家屬度過撤除維生醫療之後的哀傷過程，讓個案於家屬陪伴下善終。藉此經驗分享，使護理師對於無效醫療之認知及撤除維生醫療所產生之醫療困境更為重視，減少了無效醫療，提升生命末期照護品質。

This case report elucidates the experience of nursing care for a patient with spinocerebellar ataxia (SCA).This patient's neurological symptoms had progressed to being long-term bedridden and dysphagia. Despite of recovery of spontaneous circulation from cardiac arrest during hospitalization, patient's brain function manifested severe diffuse dysfunction and hypoperfusion. Because of persistent status epilepticus, patient's family hoped to withdraw life-sustaining treatment for peaceful dying. During the nursing period from March 1st to April 14th, 2014, we implemented the physical, mental, social and spiritual assessment of patient and families, and complied the major nursing problems included change of brain perfusion, decision making conflict between families and anticipatory grief of family. Through the intensive care process, intensity of epilepticus attack decreased. Due to the irreversibility of consciousness, withdrawal consensus was made. After consulting Clinical Ethics Committee and utilizing transdisciplinary care model, this patient's life-sustaining treatment was regarded as medical futility, and deciding to withdrawal. Afterwards, palliative and end of life care concept was integrated to caring process, and accompanied with families through the grief process after withdrawal of life-sustaining treatment. By sharing the caring experience, we hope to raise nurses' awareness of medical futility and pay attention to medical dilemmas come from withdrawal of life-sustaining treatment, consequently, reduce medical futility and promote quality of care of end-of-life.

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