本篇報告是描述一位21+3週、出生體重416公克之極低體重早產兒,家屬原是滿心期待新生命的到來,卻因早產而被迫面對病情急速惡化的無助及預期個案即將死亡的衝擊,經由安寧療護介入其家庭之護理經驗。護理期間自2017年6月26日至6月28日,依生理、心理、靈性及家庭評估模式對個案及案父母進行整體性評估、觀察及訪談收集資料,探討個案的健康問題與案父母所面臨之問題,歸納出「氣體交換功能障礙/與個案極度早產肺部未發育而影響氧合有關」、「抉擇衝突/與案父母面臨不知如何做醫療抉擇是對個案最有利有關」及「哀傷/與個案瀕臨死亡有關」等健康問題。因個案是極低體重早產兒,各器官及生理功能極度不成熟,存活率極低,家屬除了需面對無情的病情變化,更要面臨孩子即將走向死亡的無助,這對剛成為父母親的家屬造成心理上極大的創傷。筆者在護理過程中運用新生兒安寧療護,在個案生命末期,提供生理需求的滿足與舒適,讓個案善終。與家屬會談時,利用傾聽與開放性的溝通,引導家屬表達內心的哀傷與悲痛、協助家屬調適因各種醫療抉擇及心理上造成的壓力、鼓勵觸摸孩子連結彼此的情感,降低焦慮、不安及罪惡感,提供情緒上的支持陪伴家屬面對死亡,並利用四道人生引導家屬在個案生命末期時對個案道愛、道歉、道謝、道別,達到生死兩相安。
This study described a nursing care experience of an extremely low birth weight premature infant born at 21 weeks and 3 days with a birth weight of 416g from June 26 to 28, 2017. Hospice care was implemented for the family members, who had been expecting a new life and then faced the death of the newborn. A comprehensive evaluation based on Roy's Adaptation Model was used, and data were collected by observing and interviewing the parents to explore the health issues of the infant and problems the parents had to face, including 1. gas exchange dysfunction, which was related to extreme prematurity of the infant, 2. decisional conflict, which was related to whether to sign DNR or not, and 3. grief, which was related to the dying infant and neonatal hospice and palliative care. The helpless family members suffered from the unstable medical condition of the dying infant and struggled emotionally. Neonatal hospice and palliative care was implemented for the infant to obtain physical comfort and a peaceful death at the end of life. Listening and consulting techniques were used in interviews with the parents, and they were provided with supporting systems to reduce anxiety, uneasiness, stress and sense of guilt. They were encouraged to express four essential things to their beloved baby: love, sorry, thanks and farewell, so the bereaved family members could ease the grief while the infant had a peaceful death.