面容倫理：鄉村型居家安寧照顧者的置身所在

The Ethicality of Face: Exploring the Caring Situatedness of Home-based Caretakers Providing Palliative Care in Rural Communities

本研究探討居家安寧照顧者的置身所在，嘗試理解其心理經驗、照顧意涵和倫理關係轉化。透過田野參與觀察與深度訪談法，以北部某醫院社區安寧療護服務區域為田野，訪談接受社區安寧照護之五位家屬主要照顧者，每人兩次。資料分析依現象學心理學方法，而後，邀請兩名受訪者，對資料的組織脈絡描述及其所驅動的主題置身結構，予以交叉複核，提升研究可靠度。研究結果發現，鄉村型態安寧照顧者的置身經驗，呈現一種既安居又陌生的處境混合狀態。一方面，受訪者經驗到的棲居地域，並不侷限於家屋建築或特定地域，更是對情感的依附；另一方面，照顧事件的衝擊，為照顧者帶來一種既熟悉又陌生的詭譎「無居家感」狀態。然而，如此看似矛盾處境，反使其於回應居家照顧處境面容倫理下，啟動反身窺探自我生命。同時，傳統文化於居家照顧處境中自我與他者間關係的張力，進一步帶出居家照顧作為倫理行動，進而深刻化「照顧自己／關切他人」的意涵。

The goal of the home-based palliative care model is to facilitate the feeling of being at home for patients and their families. In contrast to the standard medical power domination perspective, the home-based palliative care model focuses on ethical relationships in addition to bio-psycho-social care aspects. The caregivers and the patient living at home are involved in a situated experience, which refers to the holistic situation of managing the experience, one’s self, and the other person.
We aimed to understand the situated caring of family members performing the role of home-based palliative caregiver, and examined the feeling of being at home through the care relationship. We used participatory observation and in-depth interviews to collect data. We recruited 5 family caregivers from a home-based palliative care service in northern Taiwan and interviewed each person twice. Interviews were recorded, transcribed, and analyzed using phenomenological psychology methods.
The analysis revealed that caregivers were ambivalent about their living situation. They described their experiences as seeming both familiar and strange. The caregivers’pattern of being-in-the-world was constructed from the perspective of comfort in the human-environment relationship (a sense of feeling at home). However, they were also bothered by the problem of providing care as they faced new challenges and situations, which made their situation feel unlike home. Existence takes on alien and uncanny qualities in this unhomelike situation. Together, these two aspects of caring manifested the meaning of existentialism. In this context, caring is not only labor, it is also an ethical response to worry and helps to recapture and maintain relationships with others. Ethical caring is the cornerstone of relational understanding. It stems from human subjectivity rather than medical positivism.
The 5 participants in this study shifted their focus from the displacement of others to themselves. According to Levinas (1969) and Foucault (1988), when the patient’s face signals moral suffering and emotional distress, the ability to respond with simultaneous self-care is the responsibility of the caregiver. Showing that self-care is a personal ethical action. In other words, the patient and the caregiver are linked; the nature of the patient’s situation requires self-care as a response. This perspective echoes the humanistic clinical approach to ethical relationships. One need not first deal with the cause of another person’s suffering, but instead one needs to face the responsibility of suffering for others.
We found that home-based caregivers perceived that face-to-face ethical actions initiated a shift in focus from the patient to the self. The feeling of being at home and the sense of being in a situation that was not like home were so contradictory that the participants felt forced to examine themselves and their relationships with family members. This examination highlighted home care as an ethical action and as the impetus for re-forging the self. Long-term home care can stimulate the transformation of relationships and the feeling of being at home. It can be an opportunity to enact cultural traditions, and at the same time lead to exploration of ethical care within the family. Our examination of the situatedness of home-based palliative care may support future planning for community-based palliative care in similar situations.