末期病人在安寧居家中的居家處境

Terminally Ill Patients and Hospice Care at Home: Exploring the“At Home”Situation

家，作為安寧居家末期病人的照護與生活場域，一是普遍將末期病人的返家或是在家，即視為一種居家；其次，是認為居家將有助於末期病人的身心安適，如從壓力因應、適應觀點的研究，試圖去探究有、無接受安寧居家的末期病人在因應型態、身心適應結果是否有顯現差異，但結果卻是不一致，或未有差異。本研究為探究末期病人的居家意涵，以棲居及無居家感為路徑，藉以擴充居家之內涵外，並解釋壓力因應或適應觀點的不足之處，及解釋過去研究結果不一致的可能原因。本研究以某醫院安寧居家的五名末期病人為受訪者，依據病人可否受訪與訪談資料飽和度，分別進行一至二次訪談。資料蒐集後，再以現象學心理學方法進行分析。結果顯示，五名受訪者的置身結構與普遍結構外，並針對居家處境、宿緣關係及情感異質性與壓力因應及適應的關係，以及凝視與醫療無法抵達之處、無居家感與疾病表徵在居家歷程的角色進行討論。同時針對上述提出建議，以作為後續安寧居家末期病人研究之基礎。

Home is a care and living environment for terminally ill patients who can remain at home peacefully. However, in both practice and research, firstly, the return to home care or stay-at-home experience of terminally ill patients is generally regarded as a form of being‘at home’. Additionally, research has explored whether differences exist in coping styles and physical and mental adaptation outcomes between terminally ill patients with and without hospice care at home, particularly from the perspectives of stress-coping and adaptation. However, the results have been inconsistent or have shown no significant differences. To further explore the meaning of‘at home’for terminally ill patients, this study employs the concepts of dwelling and uncanny to address the limitations of stress-coping and adaptation perspectives, thereby expanding the meaning of‘at home’and explaining possible reasons for inconsistent results in previous studies. This study involved five end-of-life patients recruited from a home-based hospice care service in Taiwan. One or two interviews were conducted with each participant, depending on whether the patients could be interviewed twice and on the saturation of the interview data. The data were analyzed using phenomenological psychological methods. The results reveal both the individual and general structure of the five interviewees, focusing on the stress-coping and adaptation in relation to the emotional heterogeneity of being‘at home’and Situated-Yuan relationship. The discussion also addresses the gaze, medical inaccessibility, the sense of homelessness and the uncanny, illness representation while at home. Recommendations based on these findings are proposed to inform future research and practice.