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題名：生命末期照護善終的優先選擇：以臺灣臨床工作者為例
作者：施勝烽
作者(外文)：Sheng-Feng Shih
校院名稱：元智大學
系所名稱：管理學院博士班
指導教授：盧煜煬
學位類別：博士
出版日期：2013
主題關鍵詞：生命末期照護；優先選擇；臨床工作者；焦點團體；主路徑分析法；IPSO協調機制；end-of-life care (EOLC)；preference；clinical workers；focus group interview；main path analysis；IPSO coordination mechanism
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研究目的：本研究的目的在於探討臺灣醫院在生命末期照護（end-of-life care, EOLC）的運作現況，透過實證資料的蒐集和分析，進一步與國外生命末期照護相關文獻的演進脈絡做比較，以瞭解彼此間的相關性，並提出改善臺灣在生命末期照護品質的協調機制。方法：本研究首先透過焦點團體訪談（focus group interview）來蒐集國內臨床實務資料，並進一步分析臨床工作者對於生命末期照護的觀點，接著，從社會網絡概念著手，以引用分析為基礎的主路徑分析法（main path analysis）找出生命末期照護相關文獻在過去二十年來開枝散葉的發展脈絡，並分析個別集群的類型和特徵，再與焦點團體訪談資料相互驗證。結果：隨著治療時間的不一致，未來治癒性醫療與支持性醫療應是相輔相成的，彼此間具有關聯性，這一個關聯性最終是以病患與家屬「生活品質」的優劣作為評估指標。本研究透過焦點團體訪談講述對生命末期照護的看法，蒐集目前臨床實務現況的操作資料，故整理出四點分類範疇：（1）高標準的生命末期照護（high-standard of EOL care）；（2）優質的健康照護（high-quality health care）；（3）高水平的知識與能力（high level of knowledge and competence）；（4）優質的溝通（high-quality communication）。並與主路徑分析法整理出的個別集群相互呼應，發現臺灣從過去的癌症診斷確定逐漸從治療提升到安寧療護，已經不單單只是維持病患生命的系統，透過病患與家屬的需求和溝通，臨床工作者從病患事前的疼痛控制與症狀緩解，到給予家屬事後的精神支持與悲傷輔導，讓臨床工作者在面對實務工作時，除專業照護知能外，應兼顧在生命末期照護過程的多重面向之技能，以貼近病患與家屬的真正感受。結論：本研究指引出臨床工作者為了讓病患與家屬獲得「信心」和「信任」的動力，透過自我檢視「面對病患死亡的悲傷情緒」、「勝任悲傷輔導的能力與限制」，以及「面臨不確定與突發狀況的容忍度」，達成增進事前準備以減輕壓力負荷的較佳狀態，故整理出四點結論：(1)治療、安寧療護與生命末期照護之同步發展；(2)尊重病患自主與最大利益；(3)非預期性哀傷之陪伴；(4)以病患與家屬為中心之醫病溝通和病情告知之衝突。此外，在生命末期照護領域中，經由家屬支持團體或病友會，提供病患及照顧者疾病相關知識、照顧技能與資訊、提供器官捐贈相關訊息與協助辦理臨終不施行心肺復甦術等。因此，生命末期照護重視以病患為中心的連續性照顧，依據其需求不同的疾病狀況、身體功能、心理社會功能與靈性功能所引起的困擾，藉由臨床工作者連結家庭（家屬）照顧資源，使其獲得適切的照護服務，進一步提出臨床工作者目標的界定與內外部的IPSO協調機制（助力、整合、定位與主導力），照其依據有助於病患與家屬適應疾病所帶來之改善生活品質和重建心理復原。
Objectives: this study mainly discusses the implementation status of end-of-life care (EOLC) in Taiwanese hospitals. Firstly, we collect and analyze domestically clinical evidence; meanwhile, we organize references for tracing development trajectory of EOLC in other countries to realize the association of EOLC between home and abroad. Finally, we propose a coordination mechanism for improving nursing quality in Taiwan toward the end of life. Methods: the domestically clinical evidence is collected by interviewing with several focus groups and then we analyze these clinical workers’ opinions on EOLC. Meanwhile, we use main path analysis based on the concept of social network to trace the divergence and convergence of EOLC development in abroad in the past twenty years and further categorize and characterize each cluster for comparing with our empirical study. Results: because the different treatment period is required, curative care and supportive care will be essentially complementary to each other at EOLC in the future. The performance of EOLC can be assessed according to the quality of life among patients and their families. This study summarize four EOLC domains from interviews with focus groups and collection of clinically operational data: (1) high-standard EOLC; (2) high-quality health care; (3) high-level knowledge and competence; (4) high-quality communication. These domains respond to individual cluster obtained from main path analysis, and we find that patients in Taiwan have recently been provided with hospice care rather than rarely life-sustaining treatment after cancer diagnosis is confirmed. Clinical workers are involved not only in management of patients’ pain control and symptom relief but in mental support and grief consultation for families after patients’ death. Therefore, clinical workers should learn multiple aspects of EOLC to satisfy patients’ and families’ real need. Conclusions: to continuously help patients and families build confidence and trust, clinical workers need to stay a good physical and psychological condition within a stressful work environment by means of examining themselves in emotional fluctuation with patient’s death, grief counseling competence and its limitation, and tolerance of uncertainty and emergency. Conclusions of the analysis show that (1) simultaneous development of treatment, palliative care and end-of-life care; (2) respect for patients’ decision-making and optimal benefits; (3) companion of unexpected grief; (4) patient and family-centered communication and conflicts arising from deterioration in the patient’s state. Additionally, family support groups and patient association can share illness-related knowledge, nursing skill, information of organ donation and DNR orders with patients and caregivers at EOLC. Therefore, EOLC emphasizes patient-centered continuity of care to give patients with different illness more comfort care by involving clinician and family nursing resources based on variously physical/psychosocial/spiritual suffering. Furthermore, we identify goals of EOLC and establish internal and external coordination mechanism for clinical workers called IPSO (i.e. integration, power, support and orientation), which can help patients and families improve the quality of life and reach psychological rehabilitation.
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