他走的很安詳，還在微笑：一位母親經歷癌症兒童瀕臨末期至死亡後之心路歷程

Gone with Peace and Smile--Psychological Process of a Mother with Cancer Child Suffering from Terminal Stage to Post-death

本個案研究主要目的在探討一位母親經歷癌症兒童瀕臨末期至死亡後之心路歷程，為「父母經歷癌症兒童復發至死亡後的調適模式：長期追蹤研究」之前驅研究結果。採用質性研究法，以參與觀察、長期追蹤訪談及醫院病歷參考來收集資料，將訪談互動過程寫成十四篇的行為過程記錄，並根據Miles & Huberman (1994)的內容分析法來分析資料。研究結果歸納出下列的心路歷程：等待奇蹟且絕不輕言放棄、因期待差距而引發情緒外射、意識到病程走下坡而徬徨無助、企圖與所有孩子共存亡、浮現不安全感與無法勝任感、對疼痛控制出現兩極化反應、對DNR出現道德兩難的抉擇、迴避正面碰觸死亡話題、喜願圓夢以減輕遺憾、假設性推論生命期限、家人的成長轉變引發內省、重新正向詮釋死亡、盡最後的心意、喪親後引發哀慟情緒、面對現實並重新定位生活目標。本文提出臨床觀察的重要洞見，若護理人員能真正去體會及感受家屬經歷兒童生命末期至死亡的心路歷程時，將能在幽谷伴行中提供更人性化的臨終照護。

This qualitative case study was the result of preliminary research of 'Parental adaptation model from relapse to post-death of childhood cancer: a longitudinal study'. The purpose of this study was to explore a mother's psychological process with a cancer child suffering from terminal stage to post-death. Data were collected from participant observation, long-term follow-up interview and medical chart review. Fourteen process recordings from interview were done and analyzed by content analysis methods of Miles and Huberman (1994). The findings expressed a mother's (1) waiting for miracle and never give-up, (2) emotional projection due to expectation discrepancy, (3) helplessness when perceiving course of disease going downhill, (4) attemptation to coexist to die with all children, (5) emerging un-safety and incapability, (6) the reaction of polarization to pain control, (7) moral dilemma to do-not-resuscitate (DNR) decision, (8) avoiding touching death issue directly, (9) fulfilling child's wish to alleviate regret, (10) hypothetic inference of life interval, (11) family's growth and change inducing introspection, (12) reframing death in positive way, (13) sparing every efforts, (14) bereavement emotion after death of child, and (15) confronting reality and re-orientating to new goal of life. This study presented concise clinical observations that pointed out important insights. Could nursing staff perceive parents' inner psychological processes, we would be able to provide more humanistic end-of-life care in sharing the darkness.