實踐「善終」：安寧照護的實作、預期工作與專門技能

Practicing a “Good Death”: Practices, Anticipation Work, and Expertise in Hospice Care

在死亡高度醫療化的脈絡下，人們如何實踐善終？從1990年代開始，台灣社會中的多元行動者不斷透過協商去界定什麼是善終，以及如何達到善終。安寧照護網絡在倡議新型態的善終扮演重要的角色，除了主張避免無效醫療外，並透過緩和臨終者身心靈受苦的方式，讓末期病人能平靜且自然死亡。安寧照護網絡所建立理想化且高標準的善終論述，強化病人自主的重要性，強調人們預先做好醫療抉擇更有機會獲得善終。然而實務上，末期病人要實現理想的善終，需要密集的照護工作支持。本研究強調從照護實作的觀點，探討醫療專業與常民為了實踐善終，如何共同進行臨終照護。研究者為了瞭解安寧照護網絡建構的善終論述內涵，以及行動者如何進行實際照護活動，在台灣北部一間醫學中心的安寧病房進行一年期的田野觀察（2019年底至2020年底），深度訪談23位安寧團隊成員與21位病患家屬，並且分析政府、專業組織、民間組織有關於安寧照護主題的文本。
研究分析安寧照護網絡建立的過程中，發現安寧團體透過建立照護網絡以及塑造善終敘事，重新建構什麼是文化性適當的死亡。在1990年代，多方的行動者所建立安寧照護網絡，確立安寧照護的法條、規範與制度，例如2000年立法通過的《安寧緩和醫療條例》，奠定安寧照護實作的制度基礎。安寧照護網絡是由多元的行動者組成，定位在解決臨終階段的受苦的問題，而並非對抗死亡。接著，研究探討相關行動者為了穩固安寧照護網絡的運作，如何塑造善終的文化腳本，改變民眾對於文化性適當死亡方式的理解與詮釋。研究發現當代台灣社會廣泛傳播的善終敘事主要有兩種腳本：「受苦腳本」與「安詳腳本」，兩種腳本都呈現病人從診斷到過世的過程，關鍵差異在於病人是否事先表達生命末期的醫療抉擇，以及家屬是否實踐病人的意願。善終文化腳本聚焦於病人自主選擇，強調人們可以透過預先選擇，增加獲得善終可能性。而且理想的善終是由家人照護、在家發生，透過安寧的專業方式緩解身心靈的受苦，不延長也不縮短生命。然而，安寧照護網絡塑造的論述與善終敘事，比較少呈現當人們做完醫療決定後，需要進行很多照護工作，才可能實際達成善終。
本研究發現安寧照護實作中有許多不易引人注目的隱形工作，包括預期工作、舒適工作、情感工作，以及困難且複雜的專門技能。由於生命末期照護充滿時間的急迫性與不確定性，讓預測未來的預期工作更具有重要性。在安寧病房，安寧團隊的成員們運用科學知識預測病人的存活時間，並以此與家屬溝通照護計畫，安排舒適工作與情感工作以緩解末期病人的受苦。臨終照護涉及三種時間框架：病人的存活期、病人的生命軌跡、醫療組織計劃，各自代表臨床性時間、社會性時間與組織性時間。安寧團隊協調這三種時間框架，並縮減之間的落差。當病人出院接受安寧居家照護時，家庭照護者除了安排日常的照護工作之外，常常需要執行較為困難的專門技能，像是操作複雜的技術物、執行精密動作，或者進行難以被編碼、時常因情境脈絡變動的的症狀評估。研究發現安寧照護提出的理想善終提高了照護標準，讓照護工作變得更繁重，同時也增加常民操作專門工作的困難度。研究建議未來需要重視常民實作專門技能的門檻，以避免過於浪漫化常民的能動性與自主性。
本研究的具體貢獻在於四個層面：一、凸顯安寧照護中耗費心力的隱形工作。二、確立安寧照護的理想原本是貼近照護的邏輯，然而現實中許多制度設計卻依循選擇的邏輯。如果只重視選擇的行動，將無法了解照護過程中的複雜性。三、豐富對於預期工作的了解，特別是如何在病情快速變化的狀況下進行預測、溝通與行動。四、揭露臨終照護對於「家」的預設，善終論述強調家庭與家空間的重要性，但較少呈現家屋作為照護的物質基礎，還有家戶作為經濟資源再分配的單位。基於這些發現，本研究最後針對現行的安寧照護實作，提出政策規範的建議。

How do we die well in ahighly medicalized death environment in Taiwan? Many social groups have continued to redefine what constitutes“a good death”and how to achieve it since the 1990s. Within social groups, the hospice care network has played acrucial role in promoting an idealized natural death that is less medicalized and alleviates the suffering of the terminally ill through professional means. The hospice care network emphasizes the significance of patient autonomy in helping people die by confirming their advanced healthcare directive at the end-of-life stage. However, achieving an idealized death is possible only if the terminally ill receive intensive care from medical professionals and family caregivers. From the theoretical perspective of care practices, this study analyzes how to have agood death to bolster the efforts of medical professionals and family caregivers. Moreover, the researcher conducted aoneyear field observation in the hospice ward of anorthern Taiwan medical center, interviewing 23 hospice care team members and 21 family caregivers. In addition, the researcher examined the documents issued by the government, professional organizations, and non-governmental organizations to reveal the characteristics of the hospice care network.
In Chapter 2, this study identified how hospice care groups redefined the concept of culturally appropriate deaths by establishing ahospice care network. In the 1990s, the hospice care network gradually established norms, cultural cognition, and regulations regarding what constitutes agood death and how it should be achieved.
Chapter 3investigates the characteristics of narratives about agood death. To strengthen the hospice care network, hospice advocators build narratives about how to care for the terminally ill to shape the cultural script of agood death. The culture script emphasizes the importance of patient autonomy regarding whether or not to use lifeprolonging treatment and resuscitation technologies, suggesting that terminally ill patients can indeed achieve agood death through advanced care planning. Cultural scripts reinforce the idealized culturally appropriate death by caring for the families of the terminally ill at home with the help of hospice expertise to alleviate pain and distress. However, in reality, patients are not guaranteed to receive the same care as outlined in the advanced healthcare directive they choose. This study investigated how people practice hospice care in hospitals and at home. Additionally, this study identified many invisible tasks in hospice care practice, including anticipation work, comfort work, sentimental work, and expertise in care work. Predicting illness trajectories due to the high uncertainty in end-of-life care is crucial to performing anticipatory work. Chapter 4illustrates how the hospice care team uses scientific knowledge to predict patients’survival times, arrange care plans with families, and enact care practices to alleviate their physical, psychological, and spiritual suffering.
In Chapter 5, this study focuses on the challenges family caregivers face when one of their family members receives end-of-life care at home. Family caregivers often have to adopt professional care practices, such as using complex technical machines, completing high-skill care tasks, and anticipating prognostication of unpredictable illnesses. Therefore, recognizing the contributions of laypeople who engage in professional-level work to maintain the patient’s end-of-life quality at home is essential. This study contributes to the literature in four ways. It begins by highlighting the various invisible tasks in hospice care to ensure agood death. Second, it reveals the discrepancy between hospice care’s aim and reality. If we emphasize patients’choice of end-of-life care too much, we risk ignoring the complexity and uncertainty of care practice. Third, the case of hospice care networks enriches our understanding of how patients predict the future and act in the present along atrajectory of transient illness. Lastly, the study reveals the multiple implications of“home”in end-of-life care. The hospice care network emphasizes that the home is the most appropriate place to care for terminal patients because of the social significance of home and family. Nevertheless, it overlooks the importance of the house as acare infrastructure and the household as an economic reproduction and redistribution unit.