血液透析患者對預立醫療照護諮商與病人自主權利法之知識、態度與意願

根據2017年美國腎臟資料登錄系統(USRDS)年報中指出，台灣末期腎臟病(end -stage renal diseases, ESRD)發生率與盛行率位居世界第一。透析患者與其他疾病相比，隨時猝死的可能性較高、預期壽命較低。而如何突破東方傳統文化對死亡的忌諱，並參與預立醫療照護諮商與簽署預立醫療決定，有權利為自己人生的最後一段旅程做抉擇與善終，以及讓家人減少必要的心理負擔，成為當今最重要的議題。本研究目的旨在探討血液透析患者對預立醫療照護諮商和病人自主權利法的知識、態度與意願之影響因素及關聯性。本研究以中部某醫學中心血液透析患者為研究對象，採自擬結構式問卷進行調查，有效樣本為129份，內容包括患者基本特性、預立醫療照護諮商與病人自主權利法知識、態度與意願及其他相關問題等，再將所得資料以SPSS25.0軟體進行描述性統計與推論性統計，包括獨立樣本t檢定與單因子變異數分析、皮爾森相關分析、多元迴歸及階層迴歸等。研究結果顯示，在總知識整體構面標準化得分平均為23.4分，其中ACP與AD的知識（23.3分）及病人自主權利法知識（23.4分）平均得分均極低；在態度方面，ACP與AD的目標標準化得分為78.43分，ACP與AD的障礙標準化得分為55.77分，病人自主權利法態度為69.94分，ACP重要性的部分為77.62分；在意願方面，簽署之意願標準化得分為69.52分，維持生命治療之意願得分數為54.05分。大專以上、未婚、罹患糖尿病、對目前的透析決定沒有感到疑惑、醫護人員曾提供有關預立醫療照護諮商(ACP)和預立醫療決定(AD)的資訊、曾經與家人討論過病情惡化至危及生命時的醫療抉擇、認為預立醫療照護諮商(ACP)最應該由病人本人提出、認為「預立醫療照護諮商費用」應由自己全額支付或自己與其他有關單位各付一半之患者，對預立醫療照護諮商與病人自主權利法有較高的知識；女性、大專以上、未婚者、罹患高血壓、心血管疾病、心臟衰竭、一周透析為二次者、接受透析治療6～10年、已簽署過不施行心肺復甦術(DNR)意願書或預立安寧緩和醫療暨維生醫療抉擇意願書、醫護人員曾與病人或家屬討論過病情惡化至危及生命時的醫療抉擇、曾經與家人討論過病情惡化至危及生命時的醫療抉擇以及最想與醫護人員討論生命末期的意願、最希望在其他嚴重併發症開始出現的時候討論ACP、指定手足為醫療委任代理人之患者，對預立醫療照護諮商與病人自主權利法態度較為正向；女性、積蓄或退休金足以支應、罹患高血壓、心血管疾病、癌症、曾經與家人討論過病情惡化至危及生命時的醫療抉擇、最想與親人討論生命末期的意願、認為預立醫療照護諮商費用應該由自己與其他有關單位各付一半以及對目前透析沒有感到疑惑者，對參與預立醫療照護諮商與簽署預立醫療決定意願較高。病人自主權利法態度與總知識具有顯著正向關聯；簽署意願與ACP的重要性具有顯著正向關聯，維持生命治療之意願與ACP與AD的障礙具有顯著正向關聯；知識（總知識、ACP與AD知識、病人自主權利法知識）在簽署之意願與維持生命治療之意願皆無顯著影響。在同時考慮知識與態度的影響下，ACP與AD的知識、ACP的重要性對簽署之意願有顯著正向影響，病人自主權立法知識則有顯著負向影響；ACP與AD障礙對維持生命治療之意願有顯著正向影響，在知識方面皆無顯著影響。病人自主權利法從立法到真正實施，相關教育訓練與推廣仍有所不足，大部分的血液透析患者不瞭解病人自主權利法，知識不足導致對法案的認同度與意願不高，建議除積極宣導病人自主權利法外，更應加強此類型患者對病人自主權利法的相關知識，以保障末期患者的選擇權與善終權。

關鍵字

態度；知識；病人自主權利法；預立醫療照護諮商；血液透析患者；意願

並列摘要

According to the 2017 US Renal Data Registration System (end -stage renal diseases, ESRD) annual report, the incidence and prevalence of ESRD in Taiwan rank first in the world. How to break through the taboos of the traditional culture of the East, to participate in advance care planning and sign advance decision in order to make healthcare decisions for the end of life, and to reduce the psychological burden of the families have become the most important issue today. The purpose of this study was to investigate the related factors and association between knowledge, attitudes and willingness for advance care planning and patient self-determination among hemodialysis patients. In this study, a structured questionnaire was adopted to 129 hemodialysis patients of a medical center in central Taiwan. The questionnaire included personal characteristics, knowledge, attitude and willingness of advance care planning and Patient Self-Determination Act, and other related issues. Descriptive statistics and inferential statistics were obtained from SPSS 25.0 software, including t-test, one-way ANOVA, Pearson correlation analysis, multiple regression analysis and hierarchical regression. According to the results, the extremely low mean score of the total knowledge was 23.4, and the knowledge of ACP & AD and Patient Self-Determination Act were23.3 and 23.4 respectively. The mean of attitude toward the objectives of ACP & AD, barriers of ACP & AD, the Patient Self-Determination was points, and the importance of ACP were 78.43, 55.77, 69.94, and 77.62 respectively. The standardized mean score of willingness to participate ACP was 69.52, and the willingness to use sustain life treatment was 54.05. Those who educated above college, unmarried, suffering from diabetes mellitus, was not confused with the current dialysis decision, healthcare staff provided information about the advance care planning(ACP) and advance decision(AD), having discussed with the families about the life-threatening medical decisions for the end of life, the advance care planning(ACP) should initiate by the patient himself, willing to pay the all or part of "advance care planning consultation fee" had a significantly higher knowledge about advance care planning and Patient Self-Determination Act. Those who female , educated above college, unmarried, suffering from hypertension, cardiovascular diseases, and heart failure, dialysis twice a week, receiving dialysis treatment for 6 to 10 years, having signed do not resuscitate (DNR) or palliative care willingness, having healthcare professionals discussed medical decision to life-threatening treatments with patients or their families, discussing with their families about the life-threatening medical decisions for the end of life, the most willing to discuss end-of-life with medical staff, initiating ACP discussion when other serious complications beginning, designating patients with siblings as surrogates had positive attitude towards advance care planning and Patient Self-Determination Act. There were higher willingness of participant to advance care planning and patient self-determination among patients those who female, savings or pensions are sufficient to support their life, suffering from hypertension, cardiovascular diseases, and cancers, discussing with their families about the life-threatening medical decisions for the end of life, wanting to discuss the willingness of life with loved ones, and willing to pay the all or part of "advance care planning consultation fee". There was a positive association between attitude toward Patient Self-Determination and total knowledge, the willingness to participant and the importance of ACP, and the willingness to sustain life treatments and the barriers of ACP & AD. Knowledge (such as total, ACP & AD, and Patient Self-Determination Act) has no significant association to the willingness to participant and to sustain life treatments. Consideration both knowledge and attitude, the willingness to participant had a significantly positive association to knowledge of ACP & AD, and the importance of ACP, and had a was significantly negative association to knowledge of Patient Self-Determination Act. There was a significant positive association between ACP & AD barriers and the willingness to sustain life treatments. From the legislation to the actual implementation of the Patient Self-Determination Act, there is still a lack of relevant education, training and promotion. Most hemodialysis patients do not understand the Patient Self-Determination Act. The lack of knowledge leads to low recognition and willingness to this policy. In order to guide the patient's autonomy, the relevant knowledge of the Patient Self-Determination Act should be strengthened to ensure the right to decide the care of end of life.