臨終如何居家？常民照護實作與專門技能

Caring for the Dying at Home: Care Practices and Expertise of the Family Caregivers

臺灣的臨終照護已高度機構化，但仍有一群家庭照護者在家進行居家安寧照護。本文探討家庭照護者為了協助病人在家善終所需具備的專門技能，以及如何實踐。研究資料來自於2019年至2020年期間在安寧病房的參與觀察，以及對21位家屬與10位醫療團隊成員的深度訪談。本文發現在居家安寧照護中，專業與常民的分工界線變得模糊。家庭照護者需要依循醫療專業標準，同時具備更多樣且困難的專門技能。這些技能包括可以依循指令操作的「模板專門技能」，以及需要以社會化方式傳遞的「情境專門技能」。家庭照護者的專門技能主要體現在三個方面：舒適工作、情感工作與預期工作。然而，這些家庭的照護實作受到醫療化、照護軌跡以及社會經濟資源三種因素影響。此外，臨終軌跡的高度不確定性也增加常民在有限時間內掌握專門技能的難度。本文的政策意涵強調必須正視常民操作專門技能的成本代價。建議建立可以支援家庭照護者實作專門技能的社會網絡，並多元化善終的照護腳本。

Despite the trend of highly institutionalized end-of-life care in Taiwanese society, some family caregivers choose to care for terminally ill patients at home. How do these family caregivers practice the highly specialized skills? The research data includes observation and in-depth interviews with 21 family members and ten medical team members in the palliative ward from 2019 to 2020. Based on the conceptualization of“expertise,”this study found that family members need to do a lot of works to care terminal patients at home. Lay people’s care practice at hospice home care includes three aspects: 1. Comfort work: Home caregivers operate complex techniques to relieve the patient’s symptoms to achieve medical care standards. 2. Sentimental work: Home caregivers must also have specialized skills related to managing their own emotions and changing patient’s attitude toward impeding death. 3. Anticipation work: home caregivers manage the uncertainty of timing and the variety of death symptoms in end-of-life care through forecasting and rearranging care work. Three factors influence the care practice: the degree of medicalization pursued by family caregivers, the care trajectory of short-or long-term care, and the number utilization of socioeconomic resources. The policy implication of this article is that we should value the threshold for laypeople to operate professional skills and assist family caregivers with support networks.