善終指數的建構：以安寧緩和醫學觀點為前驅及導向之研究

臨終醫療照護的品質要求，為先進國家必然趨勢。2001年台灣地區死亡人數將近13萬人，其中癌症為所有死亡原因之第一位，佔總數的26%。臨終醫學隨著「安寧緩和條例」的實施而成為熱門話題。然而，安寧緩和醫療團隊最高宗旨：「善終」，其定義卻非常難以釐清。 本研究的目的是探索本土癌末臨終生活品質之領域，著眼於生命的最後一段光陰，將所有會影響健康的臨終事件作全面性的剖析，建立明確本土定義與範圍，並擬定以靈性的正向安然狀態為善終決定點，為臨床醫護人員發展一個臨床評價及監測或醫療措施的標準。希望能發展出既符合台灣本土化，也能進行科技及國際整合之臨終生活品質測量工具。研究內涵包括臨終醫學的善終的模式、安寧緩和醫學的結果面稽核的探討、增加世人對死亡的認知知識、探討臨終醫學重要的領域，尤其是社會心理及靈性層面的問題的評估方法、探討癌末病患的生活品質影響因素。透過瀏覽生活品質研究之理論，導引生活品質指標創作過程及研究模式。 研究過程中，透過詳盡的文獻收集及閱讀及循環詮釋，研究架構成為三大領域，十八項子題及五項附註評估項目的善終指數，並規劃為「善終評量表」供臨床使用。為了檢測信效度及實際操作所需，撰寫界面，「病患問題評量表」問卷，詳細說明各子題操作型定義及舉例說明意義。並設計子研究及其問卷「病患心願及擔心事項調查表」為質性研究並作為效標。 實際施測蒐集144份問卷，經過基本信效度檢驗，「善終評量表」在效標關聯效度（斯皮爾曼係數0.142-0.874，大多介於0.5-0.8，P<0.01）、內容效度、建構效度、評分者間信度（斯皮爾曼係數0.065-0.957，大多介於0.5-0.8，P<0.01）、題目鑑別度（臨界比 2.31-5.33，其中12個題目CR值大於3）均有一定水準的表現。 文章最後提出修改內容及新架構，研究中的困難及限制，並討論生活品質研究及質性研究之通則與模式，以及臨終照護模式，並構思以新的架構為主軸的未來研究方向，以供國內類似研究的參考。

Qualifying care of end of life is a trend in the developed country. There are about 130 thousands death, during 2001 DC in Taiwan, cancer is the leading cause to account for 26% of total death. End of life care has become a popular subject following the “ Hospice ordinance of Taiwan ” into practice. However, the definition of “a good death”, which is the highest aim of a hospice palliative team, is still obscure. The purpose of this article is to explore all domains of quality of life (QL) of the terminal ill cancer patients. With an eye on the last period of life, the impact of events around death against health will be profiled. This study tries to address the regional definitions and scope of these terminal events and suppose that the end point of “ a good death ” must be an attitude of positive well-being. In this point of view, we hope to construct a regional QL instrument for end of life care. This instrument can be used for a standard of clinical evaluation and outcome audit. The implications of this study include as the following: the framework and principles of a good death; the discussion of clinical evaluation and outcome audit in hospice palliative care; themes of death; the techniques of assessing the other important domains than physical symptoms, especially the psychosocial and spiritual domains, in end of life care; the analysis of factors affecting the quality of life of terminal ill cancer patients. Reviewing current theories of QL study, process of constructing a QL index was conducted as well as guideline of QL report. In this study, a frame of a good death was sketched and the “Good Death Index” was schemed with 3 domains; 18 items and 5 additional notations, by the way of detailed articles review and hermeneutic circle. A format of “Good Death Scale” was administrated clinically. For practical use and validation, a “problem-orientated questionnaire for caregiver” was designed with operational definitions and examples as an interface and a “ wishes and concerns questionnaire for patient” for conceptual study and criterion. After a basic validation practiced in our Hospice Palliative care unit with collecting 144 questionnaires, “Good Death Scale” showed a fair validity and reliability in Criterion-related validity（Spearman rank correlation 0.142-0.874, almost among 0.5-0.8, P<0.01）；content validity；construct validity；inter-rater reliability（Spearman rank correlation 0.065-0.95, almost among 0.5-0.8, P<0.01）and item discrimination analysis（critical ratio 2.31-5.33）. In the last chapter, content revision and a new version of Good Death index were brought up, as well as further study under the new framework. In addition, models of QL report and end of life care were discussed. These experiences from this study may be useful for regional analogous study in Taiwan.