「從有限到永恆」末期病人面對死亡之經驗研究
—以非癌症慢性疾病病人為例

本研究的研究目的為探討非癌症慢性疾病末期病人面對死亡之內在經驗，以及知覺死亡對其生命經驗所帶來的衝擊與影響。本研究為個案研究法，以立意取樣的方式，篩選出三位非癌症慢性疾病末期病人為本研究之研究參與者，並以質性研究方法分析資料。主要結果顯示：ㄧ、非癌症慢性疾病末期病人面對死亡之經驗，呈現三個主題：「不知所措」轉成「如呼吸般自然」；「瀕死知死而心定」轉成「著手預備」；「無奈探問」轉成「接納重整」。二、知覺死亡對於非癌症慢性病末期病人生命經驗的影響，呈現四個主要結果：（ㄧ）勇於面對不可預測的死亡威脅，選擇承擔自己與家人的現況處境的責任，使他們感到有尊嚴與價值；維持原本的角色功能有助於希望感。（二）面對存在孤獨的處境，將牽掛化做行動，反轉『無用』成『有用』，自我照顧是傳遞愛的重要方法。（三）「規律」的回到日常的節奏，等於遠離死亡的不確定感；掌握日常的秩序，得平衡面對死亡的不安，有保護免於被死亡焦慮的侵蝕的意義。（四）死亡的時間軸變化：崩解之後重建總言之，非癌症慢性疾病末期病人的緩和醫療的照護，必須多元與彈性，並即早介入且持續的社心支持；透過情境營照的方式『賦能』於病人，並陪伴病人創造屬於自我的規律日常節奏，有意識地維持病人的尊嚴。

關鍵字

非癌症；末期；死亡焦慮；疾病軌跡；存在經驗

並列摘要

The main purpose of this study is to explore the intrinsic experience of patients with non-cancer chronic diseases in the face of death, and the impact and impact of perceptual death on their life experience. In this study, the case study method was used to screen out three non-cancer chronic disease patients at the end of the study. The data were analyzed by qualitative research methods. Three themes and transformations in mindset were identified and observed from the experiences of terminally ill patients with non-cancer, chronic diseases in facing imminent death, namely, transforming from being at a loss to accepting facts calmly, from being calm after knowing their imminent death to making preparations, and from feeling helpless in seeking solutions to accepting facts and reorienting their mindset. The following four main results were discerned regarding the influence of perceived death on the life experiences of the patients: 1. Courageously facing the unpredictable threat of death and choosing to shoulder responsibility over the current situation of themselves and their family members provided the patients with a sense of dignity and worth; maintaining their original roles was conducive to generating hope. 2. In the face of loneliness, engaging in self-care, such as transforming worry to action and uselessness to usefulness, served as a crucial means for expressing their love. 3. Returning to their regular daily routine facilitated in mitigating the sense of uncertainty in imminent death; being in control of their everyday routines alleviated their sense of insecurity, shielding the patients from being overwhelmed by their anxiety over death. 4. The patients enabled “changing” the timetable of death through dismantling and reconstruction. In summary, it is crucial that diversity and flexibility be incorporated in the palliative care for terminally ill patients with non-cancer, chronic diseases that exhibit complex illness trajectories in order to respond to the needs for managing the unpredictability of death and to provide long-term support. Medical professionals must consciously maintain patients’ dignity and provide roles for patients to play by introducing situations and accompanying the patients in creating regular daily routines.