失智者及其家屬預立醫療決定之影響因素與困難及需求協助之探討

研究背景：失智者照護上有許多倫理議題，然而，不同於其他末期疾病，隨著失智症疾病發展，決策能力受影響，無法明確表達自身醫療偏好，疾病末期的預立醫療決定為迫切且重要的照顧倫理議題。研究目的：探討失智者及其家屬預立醫療決定之影響因素與困難及需求協助。研究方法：本研究為質量型混合式研究設計，採立意及滾雪球取樣方式，以半結構式問卷訪談收集資料，失智者及其家屬的基本資料採描述性統計分析，開放式問題以內容分析法，將失智者及家屬在預立醫療決定的原因、困難、所需的協助的相關資料進行分類與歸納。研究結果：八成以上的失智者未簽屬預立醫療決定相關文件，在預立醫療決定相關經驗及需求上，七成五以上的失智者未跟家屬討論過生命末期預立醫療決定的相關議題；失智者家屬在簽屬預立醫療決定方面：有八至九成的人不曾替失智者簽署預立醫療決定相關的同意書。在預立醫療決定相關經驗及需求上，分別有六成至九成的人不曾和失智者討論過生命末期預立醫療決定的相關意願，在跟誰討論過失智者生命末期預立醫療決定的相關話題中：曾和家人討論者為 6.25~34.37%、曾和醫護人員討論者低於1 成。開放式問題中，失智者簽立預立醫療決定的原因及困難歸納之主題為失智者本身對此項議題不了解；其所需的協助歸納之主題為家屬及醫護團隊協助。影響失智者家屬簽立預立醫療決定的原因及困難歸納之主題為病情嚴重度、談論死亡的禁忌、傳統孝道觀念、家人意見、主要決策者、資訊不足、醫護支持；其簽立預立醫療決定所需的協助歸納之主題為增加資訊的普及度，例如政府主動的訊息提供與醫護主動提供醫療端的協助。結論：本研究結果反映了失智者對於預立醫療決定的相關議題不熟悉，可以透過相關協助，如發放衛教單張、辦理相關講座、大眾媒體的傳播，以及醫護人員能夠提供相關的衛教及解說，以促進失智者及其家屬進一步思考生命末期自身的醫療偏好；此份調查將有助於醫護團隊更了解失智者或失智者家屬的難處，未來期能製作失智者及家屬擬定預立醫療決定照護計畫時所需的衛教手冊、影片與照護指引。

關鍵字

失智症；生命末期；預立醫療決定；倫理議題

並列摘要

Background：Many ethical issues exist in dementia care, however, unlike the other disease progression, the cognitive function of dementia declines obviously before its end stage. As the disease deteriorates from moderate to severe stage, the medical decision-making is difficult to be expressed to represent these patients’ own medical autonomy. The advanced directives (AD) for medical decision before the end stage of the disease is an urgent and important ethical issue. Research objectives：The research purpose is to investigate AD and its influencing factors, difficulties, and assistant needs among patients with dementia and their families. Research method：A mixed methods research design with purposive and snowball sampling method was used. The semi-structured questionnaire interview was used to collect data. The descriptive statistical analysis was used to analyze demographic characteristics of demented persons and their families. Content analysis was used to induct and classify the opening questions. Result：More than 80% of the demented persons did not sign the relevant documents of the advance directives. More than 75% of the demented persons did not discuss the AD at the end of life with their families. 80% ~ 90% families of demented persons did not sign the relevant documents of the advance directives. 60% ~ 90% have not discussed the willingness of medical decisions for end of life with demented persons. In regard to the discussion of AD, 6.25-34.37% demented persons had discussed with family members, and less than 10% with healthy providers. According to the interview for opening questions, the themes of influencing factors and difficulties showed the dementia patients misunderstood the issue of AD. The theme of assistant needs for this was the assistance from family members and the health provider. The theme of influencing factors and difficulties showed the families of dementia patients were the severity of the illness, the taboo about death, traditional filial piety, family opinions, main decision makers, insufficient information, and medical support. The theme of assistant needs for this was to increase the penetration of related information, such as the initiative of the government and medical assistance from health providers. Conclusion：The results of this study showed dementia patients and their family are unfamiliar with the related issues of AD. With providing further assistance, such as health education leaflets, lectures, and media dissemination, health education and explanation from the health providers, it could enhance their further consideration about the medical preferences at the end of life. This investigation could help the health providers to understand the difficulties of demented persons or their families in advanced care planning (ACP). Future research is to make the health education materials, videos, and care guidelines of ACP for them.