預立醫療照護諮商介入對於死亡識能與家庭決策共識之探討

Abstract

背景與目的 全世界自1960年來，高端醫療科技的進步改變了死亡的面貌，挽救生命和延長苦難之間的分野逐漸模糊，死亡在過程中經常被過度醫療化，人們接受著並不想要的維生醫療，如何善終(Good Death)成為重要的課題，倡議開啟談論死亡、認識臨終時所需技能資源，進而重整生命意義的死亡識能，成為近年來善終準備的新興議題。在善終準備的過程中，涉及了生命最高保護原則與拒絕維生醫療自主權的難題，國內病人自主權利法預立醫療決定政策提供了醫療人員尊重自主的法律保護，而預立醫療照護諮商(Advance Care Planning，ACP)介入成為了解病人價值偏好與促進家庭決策共識的溝通知情過程。2020年由澳洲學者初次提出死亡識能指標量表(Death Literacy Index，DLI)報告，本研究目的為藉由本土化死亡識能指標(DLI)量表的驗證探索國內死亡識能的概念，進而了解預立醫療照護諮商介入是否提升死亡識能，並探索家庭關係在預立醫療照護諮商中對於其預立醫療決定的影響。 方法 因死亡概念與諮商歷程涉及個人獨特經驗，欲完整探討全貌以避免量化研究的偏誤，本研究設計採取混合研究法之鑲嵌式設計，在量性分析部分：(一) DLI部分，完成兩次中英文往返語意校正、五位專家內容效度檢視後，使用網路自填問卷完成調查，收集年滿20歲以上之民眾之意見，主要測量為DLI共四構面-實務性知識、經驗性知識、事實性知識、社區性知識 (二)介入研究部分，以北部某教學區域醫院參與預立醫療照護諮商民眾為主，於當日諮商前完成前測，一個月後以電話或郵件追蹤完成後測，主要前後測量為驗證後之死亡識能共四構面，家人共識決策以及家人關係。量性蒐集資料以SPSS19.0及AMOS22.0統計套裝軟體進行資料處理，先以描述性統計分別呈現不同研究目的之研究族群屬性資料分布，DLI測量模型方面採用驗證性因素分析，諮商介入方面採用相依樣本t檢定了解介入效果。質性部分以半結構式訪綱進行面訪，為補充DLI及ACP概念上之特殊議題及脈絡，以參與過ACP之疾病期民眾進行收案，針對疾病過程、諮商動機、價值偏好、死亡態度以及家庭關係進行深度訪談，完成逐字稿後採用ATLAS.ti軟體進行分析，編碼後確認主要分析主題與結論，進行量性結果之補充或檢證，完成整合分析。

結果 本研究結果分為三個部分： (一) 死亡識能量表部分共收集708位樣本，以女性、大學以上、自評健康普通及良好者為主，分析發現死亡識能構面平均數上以經驗性知識最高、其次為談話支持。以驗證性因素(CFA)分析，整體模型具有符合標準之適配度，χ2 (369)= 1644.314，p <.000，CFI=.913，NNFI=.891，RMSEA=.070，樣本的觀察資料與原始模型具有可接受之適配性。 (二) ACP介入部分前後測有效樣本為133位，有效樣本以50-69歲族群約佔6成，女性為主。ACP介入後在DLI的事實性知識構面有顯著差異(t= 2.75，p =.007)；在家庭決策共識層面，家人之間的同意程度(t= 3.23，p =.002)以及未來貫徹執行您決定書的信心程度(t= 1.99，p =.048) 均有顯著差異。(三) ACP及家庭決策共識主題質性部分，完成7位罕見疾病及失智症之訪談分析，結果發現(1) ACP參與動機鑲嵌於過去死亡哀働調適或疾病經驗之歷程。(2) 疾病所產生之照顧依存關係易弱化主要家人參與共識決策意願。(3) 病主法單次之ACP，對於提升疾病期家庭決策共識之幫助有限。(4) 預立醫療決定啟動之緩和醫療及社區資源於ACP尚未完整提供。本研究整合量性與質性結果分析發現，死亡識能構面中之經驗性知識與實務性知識為產生預立醫療照護諮商行動之先行項目，病主法預立醫療照護諮商介入有助於事實性知識提升，然仍欠缺社區性知識，如緩和醫療可近性與支持團體等未來預立醫療決定書啟動時之溝通；對於家人共識決策在一般民眾族群經過ACP後有所提升，然針對家庭關係及動力仍須有所關注，尤其特殊疾病狀況之意願人。 結論與建議 本研究針對國內死亡識能、預立醫療照護諮商與家庭決策共識的影響進行初探，在追尋善終的過程裡，當人們處於醫療化的死亡時，經常反而缺乏了認識死亡的機會，我們需要讓社會重新檢視死亡，允許新的想法與方式來發展多元的醫療及心理照顧服務，死亡識能是成就善終準備的重要關鍵，本土化死亡識能指標量表將可運用於各區域，針對社區善終準備程度進行評值，了解民眾對於各面向識能的缺乏，因地制宜發展介入方案。其次，目前推展的預立醫療照護諮商有助於死亡識能事實性構面以及家庭決策共識溝通提升，應擴大各醫療科別參與，並促進各社區內公私單位跨域合作，完成諮商服務前準備與諮商服務後之追蹤。最後，死亡識能概念應全面於醫療體系、學校體系與社區推廣等生命倫理教育訓練內進行推動，讓自然善終回歸社區生活脈絡，成為慈悲關懷社區的底蘊。然本研究因採國外概念可能對文化性差異有所忽略，未來相關研究可再予以發展，介入部分因採實務場域收案，難以有良好之實驗控制，推估性恐有不足，建議未來可針對可強化準實驗之設計，發展貫時性研究以深入了解介入之長期改變效果。

Background and Purpose Since the 1960s, advances in high-end medical technology have changed the concepts of death around the world, gradually blurring the distinction between saving lives and prolonging sufferings. In the process, people constantly receive unwanted life-sustaining treatments. As such, how to achieve a good death has made a topic of great importance. Advocating opening up discussions about death, learning the skills and resources required at the end of life, and further reshaping death literacy for the meaning of life have become emerging issues in the preparation for a good death over recent years. The preparation process for a good death involves the dilemma between the supreme principal of protection of life and patient autonomy in refusing life-sustaining treatments. In Taiwan, the advance decision policy stipulated by the Patient Right to Autonomy Act provides legal protections for healthcare professionals in respecting patient autonomy, and Advance Care Planning (ACP) interventions serve as a communication and informing process to understand patient value preferences and facilitate consensus building in family decision-making. In 2020, Australian scholars first proposed a report on the Death Literacy Index (DLI). The purpose of this study is to investigate the concept of death literacy in Taiwan through the validation conducted using a localized Death Literacy Index (DLI) scale, thereby understanding whether ACP interventions enhance death literacy, and exploring the influence of family relationships on advance decisions in ACP. Methods Given that the concept of death and the ACP process involve unique personal experiences, this study adopted a mixed-methods research design with a view to understanding the whole picture and avoiding bias resulting from quantitative research. In the quantitative analysis: (a) In terms of the DLI scale, two rounds of semantic corrections were completed for alignment between Chinese and English versions, and five experts were invited to examine its content validity, after which a self-administered online questionnaire survey was conducted to collect the opinions of people over 20 years of age. DLI was mainly measured around four dimensions - practical knowledge, experiential knowledge, factual knowledge, and community knowledge (b) for the study on interventions, the survey was mainly based on people who participated in the ACP at a regional teaching hospital in Northern Taiwan. The pre-test was conducted on the day of the ACP before the ACP began, and the post-test was completed one month later through follow-ups implemented by telephone or mail. The pretest and posttest primarily measured the four dimensions of post-validation death literacy, family consensus decision-making, and family relationships. The collected quantitative data were analyzed using SPSS19.0 and AMOS22.0 statistical software packages. First, descriptive statistics were used to present the distribution of demographic attributes of the study population for different research purposes. Then, confirmatory factor analysis (CFA) was adopted for the DLI measurement model. For ACP, the dependent samples t-test was conducted to understand the effects of intervention. For qualitative research, in-person interviews were conducted using a semi-structured interview outline. For the purpose of supplementing the special issues and contexts of DLI and ACP concepts, people who had participated in ACP and were in the disease period were recruited as research subjects. In-depth interviews were carried out, focusing on the disease process, motivation for participation in ACP, value preferences, attitudes toward death, and family relationships. The interview content was converted into a verbatim transcript, which was subsequently analyzed using ATLAS.ti software. After coding, the main analysis themes and conclusions were established, then supplemented or verified by the quantitative results, whereby an integrated analysis was achieved. Results The results of this study consist of three aspects: (a) In terms of the DLI scale, a total of 708 samples were collected, mainly from females with a bachelor’s or higher degree (62.1%), and those who rated themselves as having average or good health. According to the analysis results, among the dimensions of DLI, experiential knowledge achieved the highest mean score, followed by talking support. The confirmatory factor analysis (CFA) found that the overall model had a goodness-of-fit that fulfilled the criterion, χ2 (369) = 1644.314, p < .000, CFI = .913, NNFI = .891, RMSEA = .070, and that the observation data of the samples and the original model showed an acceptable goodness-of-fit. (b) In respect of ACP interventions, a total of 194 patients were enrolled, with 133 valid samples recovered for the pretest and posttest. Among the valid samples, the age group of 50-69 years and females were in the majority. Significant differences were observed in the factual knowledge dimension of DLI after the ACP intervention (t= 2.75, p = .007); at the level of family decision-making consensus, significant differences were found in the degree of AD agreement among family members and the confidence toward the willing to implement Advance Directives by the family members. (c) In the qualitative study on the themes of ACP and family decision-making consensus, interviews with seven individuals with rare diseases and dementia were analyzed, and it was found that (1) the motivation for ACP participation was embedded in previous grief, bereavement, and disease experiences. (2) The relationship of dependency between the patient and caregiver tends to weaken the intention of the family caregiver to participate ACP process and engage in the decision-making consensus. (3) The single ACP stated in the Patient Right to Autonomy Act is of limited help to enhance family decision-making consensus during the disease period. (4) Palliative care and community resources activated by advance decisions are not yet fully available in the ACP. The study integrated quantitative and qualitative research results and found the following. Among the dimensions of DLI, experiential knowledge and practical knowledge were the antecedents for the production of ACP actions. The ACP intervention stipulated in the Patient Right to Autonomy Act contributed to enhancing factual knowledge; however, there remained an inadequacy of community knowledge, such as communications concerning the accessibility of palliative care and support groups at the launch of advance decision letters in the future. The general population showed improvements in family decision-making consensus after participating in the ACP. Nevertheless, greater attention should be devoted to family relationships and motivations, especially in the case of patients with special medical conditions. Conclusions and Recommendations This study explored the impacts of death literacy, ACP, and family decision-making consensus in Taiwan. In the pursuit of a good death, it often deprives people of the opportunity to understand death, since people are always over treated by high-end medical treatments. We need to drive the society to re-examine death and allow diverse medical and psychological care services to be developed by using new ideas and methods. Death literacy is a crucial key to preparations for achieving a good death. The localized DLI scale can be used in different regions to assess the level of community readiness for a good death, thereby understanding the public’s inadequacies in each dimension of death literacy, and developing locally tailored interventions accordingly. Secondly, the currently promoted ACP program is helpful in enhancing the factual knowledge dimension of death literacy and improving communications in family consensus decision-making. Therefore, it is imperative to expand the participation of various medical departments and facilitate cross-domain cooperation between public and private divisions in all communities to complete pre-ACP preparations and post-ACP follow-ups. Finally, the concept of death literacy should be comprehensively promoted through bioethics education and training across the healthcare system, educational system, community advocacy, and other realms. In this manner, natural good deaths can return to community life scenes and become the foundation for the building of compassionate and caring communities. However, this study may have overlooked cultural differences given that the concept adopted herein was developed overseas. In view of this limitation, future related studies may carry out further development. For ACP interventions, this study recruited research subjects from a field of practice; as such, it was difficult to achieve ideal experimental control, which might lead to inadequate generalizability. It is suggested that in the future, longitudinal research can be developed for a reinforced quasi-experiment design to gain insight into the long-term effects and changes produced by interventions.