癌症末期病人於家庭照顧關係裡的被照顧經驗探索

Lived Experience of End-of-Life Patients in Caregiving Contexts

癌末病人因受疾病及死亡影響而需照顧協助。華人照顧文化多依託當事人家庭承攬照顧責任，而須投入諸多實質付出。對此，接受家庭照顧的癌末病人，其接受照顧的經驗感受可能影響心理狀態。因當前研究較少觸及此議題，本研究試圖探索癌末病人於被照顧處境的經驗與詮釋。本研究經研究倫理審查後，共邀請八位癌末病人參與研究，並於深度訪談後，以現象學進行分析。研究結果分別呈現末期病人被照顧的處境脈絡及置身感受。被照顧的處境脈絡分別為「懼死亡」、「憂死別」及「困無能」，呈現被照顧現象植基於死亡的不可抗力，及因此而來的困局。奠基此脈絡的置身感受，在面對被照顧方面，存在「身與心」、「情感與責任」的雙重性，並於「人情互惠詮釋模式」中，呈現「關係與實質資源」及「於己於人」等纏繞耗損；另一方面，「相即詮釋模式」則協助重新框架被照顧處境。在回應被照顧方面，末期病人則呈現「降低資源挹注」、「嘗試照顧家人」、「一體面對與承擔」等互動，藉此降低被照顧處境的負面影響。針對此些處境脈絡及置身感受，研究者提出照顧的應然職責與本然情感之間的錯置、企盼維護被照顧的主體性與照顧的互為主體性，以及人情互惠與相即詮釋模式的自我定位差異等現 象。最終，據以提出研究與實務之建議。

 

Patients with terminal cancer require extensive care and support owing to the impact of their illness and the inevitability of death. In Chinese caregiving culture, the patient’s family primarily assumes the responsibility of providing care, requiring substantial physical, emotional, and financial investment. Within this structure, terminal cancer patients who depend on their families experience complex emotional and psychological responses that can significantly affect their overall mental state. However, the existing research has seldom explored the lived experiences and interpretations of patients with terminal cancer regarding their caregiving situations. Therefore, this study investigated how patients with terminal cancer perceive and make sense of their caregiving experiences. After receiving approval from the research ethics committee, this study included eight patients with terminal cancer. Data were collected through in-depth interviews and analyzed using a phenomenological approach. The results illustrate the contextual framework of being cared for and patients’ subjective experiences within this context. The caregiving context is shaped by three central themes: "fear of death," "anxiety over separation," and "helplessness due to incapacity," all of which underscores the inescapable reality of death and the dilemmas it imposes on both patients and their caregivers. These themes reveal the profound emotional struggles that arise when patients face mortality while dependent on others for care. Based on this caregiving context, patients’ experiences reflect two primary dualities: "body and mind" and "emotion and responsibility." These dualities highlight the internal conflicts experienced by patients as they navigate their caregiving journeys. Under the "reciprocal human sentiment interpretation model," caregiving is perceived as a cyclical exchange of "relationships and tangible resources" and a "mutual depletion of self and others," wherein both patients and caregivers endure emotional exhaustion and resource depletion. This ongoing cycle gradually erodes familial emotional bonds and practical resources, making caregiving an increasingly burdensome experience. In contrast, under the "inter-being interpretation model," patients reinterpret their caregiving experience in a way that allows them to reclaim their subjectivity. This model shifts the perception of caregiving from a dynamic of dependency and obligation to one of relational interconnectedness, enabling patients to find new meaning in their interactions with caregivers. In responding to caregiving circumstances, the patients exhibited several strategies to mitigate the negative effects of being cared for. These include "reducing resource consumption," where patients deliberately limit their care needs to lessen the burden on family members. Additionally, "attempting to care for their family," refers to patients providing emotional or symbolic support to caregivers to foster a sense of mutual contribution. Finally, "facing and bearing the situation together," describes patients actively engaging in shared coping strategies with their families to navigate caregiving challenges collectively. Through these interactions, patients attempt to maintain a balance between their own needs and the well-being of their caregivers, striving to preserve their dignity while minimizing caregiving-related stress. Based on these findings, this study provided several critical insights into the caregiving experiences of terminal cancer patients. First, there is a misalignment between the expected caregiving duty and authentic emotional experiences of both patients and caregivers, leading to emotional strain and psychological distress. Second, there is a need to preserve both the subjectivity of care recipients and the intersubjectivity of caregiving, ensuring that patients are not merely passive recipients of care but remain active participants in their own experience. Third, the divergent perspectives of the reciprocal human sentiment interpretation and inter-being interpretation models shape how patients position themselves within the caregiving process, influencing their emotional well-being and coping strategies. Finally, this study highlighted the importance of addressing caregiving and receiving care’s psychological and emotional dimensions. In clinical practice, healthcare professionals should acknowledge the complexity of caregiving dynamics and develop interventions supporting the well-being of patients and caregivers. Future research should explore caregiving experiences across different cultural contexts and examine ways to help patients reframe their caregiving experiences to promote dignity, autonomy, and relational well-being.