探討台灣腎臟專科醫師推動腎病緩和醫療知識、態度與障礙

Abstract

背景 台灣正快速進入高齡社會，非癌症安寧療護的發展繼癌症之後成為重要課題，尤其在病人自主權利法案預計在2018年開始施行，醫護人員必須重視病人自主善終權利的需求。目前高齡多重共病透析病人的人數大幅增加，但臨床預後不見得理想，國內對於生命末期腎臟病人的定義尚不明確。本研究透過共識方式建立生命末期腎臟病人的指標，做為推動腎病緩和療護之參考。 研究方法 (一)腎病緩和療護相關文獻蒐集 使用國內外資料庫蒐集2010-2016年國際上相關腎臟緩和療護的指引，採用SIGN的指引發展方法，制訂證據等級與建議強度指標，找到生命末期腎臟病人族群。文獻搜尋結果建構「生命末期腎臟病人」初步指標。 (二)生命末期腎臟病人之問卷建構及共識凝聚 專家共識採用美國蘭德公司與洛杉磯大學共同發展的適當性評估方法(RAND/UCLA Appropriateness Method)，透過14位專家的焦點團體會談，意見回饋與共識會議結果，以評定指標適當性。 (三)全國腎臟科醫師問卷調查 透過前項焦點團體會談的結果，擬定問卷，並評估專家效度，並以分層不等比例隨機抽樣方式，發放全國調查問卷，了解全國腎臟科醫師對腎病緩和療護的知識、態度、轉介態度與對政策與服務執行的看法。對於生命末期腎臟病人的定義與指標，就問卷調查結果，以專家共識方式評定高度共識指標。並使用探索性與驗證性因素分析法，對於生命末期腎臟病人指標的潛在變項探討。 (四) 照顧生命末期腎臟病人醫護團隊質性訪談 對醫護團隊進行兩次焦點團體訪談，並以NVivo質性軟體分析訪談逐字稿，取得關於生命末期腎臟病人的資訊，以及臨床推動腎病緩和療護會遭遇到的困難。 最後採用混和研究法將量性與質性研究成果進行比較與補充，完整了解台灣腎臟科醫師對於腎病緩和療護的知識、態度與障礙。 結果 全國624家透析院所共有337家院所回覆(院所回覆率:54%), 有327位腎臟科醫師回覆(腎臟專科醫師回覆率為22.6%)，可分析問卷為322份，醫院型態醫師與門診型態醫師分布(55.6 % vs. 44.4%)，具有代表性。前者較多腎臟內科與腹膜透析門診(P<0.001); 後者多為一般內科與血液透析門診(P<0.001); 前者在一年內醫師主動提出退出血液透析次數和接受生命倫理在職訓練次數均較高(p<0.001)。分析腎臟科醫師對於生命末期腎臟病人的生命存活期認知(n=254)，認同少於一個月; 少於三個月; 少於六個月; 少於12個月; 其他比例分別為14.2% vs. 33.1% vs. 42.9% vs. 7.5% vs. 2.4%。 對於生命末期腎臟病人需要安寧療護與瀕死照護的狀況(n=254)，達到高度共識項目為「長期同時使用呼吸器及透析治療仍呈無意識狀態」，「長期同時使用呼吸器及透析治療合併多重器官衰竭」。進一步透過因素分析法，從九種指標中找出三類主要族群為: 呼吸器依賴、多重共病重症狀態與失能臥床之末期腎臟病人。 結論 以推動生命末期腎臟病人需要腎病緩和療護的政策制訂，高度共識指標應優先推動，尤其是呼吸器依賴且接受長期透析的病人。衛生主管機關對於多重共病重症狀態，與失能臥床的末期腎臟病人族群，需要投入更多的教育訓練，來促進腎臟科醫師對此課題的認知。 關鍵詞 生命末期腎臟病人、腎病緩和療護、醫病共享決策、預立醫療照護諮商、多重器官衰竭

Background Taiwan is rapidly entering the aging society and the development of non-cancer palliative care has become an important issue after cancer. Especially when the Right to Patient Autonomy Act is in force in 2019, The medical and nurse staffs must pay attention to respect the needs of the patients’ rights to have good death. At present, the number of elderly multi-morbid dialysis patients has increased significantly, but the clinical prognosis is not ideal. The definition of end-of-life renal patients in Taiwan is still unclear. This study aims to establish the indicators of end-of-life renal patients through consensus methods as a reference for promoting renal palliative care in Taiwan. Material and Method (1) Renal palliative care related literature collection Search domestic and foreign databases to collect international guidelines of renal palliative care in 2010-2016, and apply SIGN, the guidelines development method to develop the indicators and levels of evidence and recommendation, and find the group of end-of-life renal patients. The literature review results can construct the preliminary indicators of 'end-of-life renal patients'. (2) Questionnaire construction and expert consensus cohesion of end-of-life renal patients The expert consensus adopts the RAND/UCLA Appropriateness Method developed by the American RAND Corporation and the University of Los Angeles. Through the focus group discussion of 14 experts, the feedback and consensus meeting results are used to assess the appropriateness of those indicators. (3) The questionnaire survey of national-wide nephrologists in Taiwan Through the results of the previous expert focus group meeting, the questionnaire domains were constructed to explore the knowledge, attitude, referral attitude and attitude of implementing policies and services among the national-wide nephrologists on renal palliative care and the expert validity was evaluated. The questionnaire was issued by the method of disproportionate stratified random sampling. The high consensus indicators of end-of-life renal patients are adopted by the expert consensus from the survey results. We applied exploratory and confirmatory factor analyses to explore the latent variables of the end-of-life renal patients. (4) Focus group discussion for the medical and nurse staffs taking care of end-of-life renal patients Two focus group interviews were conducted with the end-of-life renal patients’ care team, and word-for-word recording transcription was analyzed by the NVivo qualitative software. We obtained information about the end-of-life renal patients and the difficulties encountered while promoting renal palliative care in clinical practice. In the end, the mixed research method is used to compare and supplement the quantitative and qualitative research results, and to fully understand the knowledge, attitudes and barriers of Taiwan nephrologists on renal palliative care. Results A total number of 337 of 624 nationwide dialysis facilities included 327 nephrologists responded to this survey (facility response rate: 54%, with licensed specialist response rate: 22.6%), and 322 nephrologists’ questionnaires were analyzed. The distribution of hospital type versus outpatient clinic (OPD) type nephrologists (55.6 % vs. 44.4%) was representative in Taiwan. The former had more nephrology and peritoneal dialysis OPDs (P<0.001) and the latter had general internal medicine and hemodialysis OPDs (P<0.001). The hospital type nephrologists initiated more episodes of forgoing dialysis and received more medical ethics training within recent one year than those of OPD type (p < 0.001). To analyze the 254 nephrologists’ perceptions of life expectancy (so-called end-of-life) for renal patients, grouped by within one month; within three months; within six months; within 12 months; and others, it was distributed as 14.2% vs. 33.1% vs. 42.9% vs. 7.5% vs. 2.4%. To analyze the indicators for end-of-life patients suitable to receive hospice and dying care among those nephrologists (n=254), the high consensus included “the prolonged mechanical ventilator (PMV) patients receiving dialysis still comatose” and “the PMV patients receiving dialysis with multi-organ failure.' Further through the factor analysis method, three latent variables were obtained from nine indicators: the group of end-of-life renal patients with ventilator dependence, the group of those with multi-morbidities and the group of those with full dependence. Conclusions To formulate the policy of promoting palliative care for end-of-life renal patients, high consensus indicators should be given priority, especially the patient group of end-of-life renal patients with ventilator dependence. The heath authority in Taiwan needs to invest more education and training to enhance nephrologists’ awareness on renal palliative care, especially for the patient groups of end-of-life patients with multi-morbidites and those with full dependence (bed-ridden). Keywords End-of-life renal patients, renal palliative care, shared decision making, advance care planning, multi-organ dysfunction syndrome.