研究背景
　　2009年十大死因粗死亡率中，原住民較非原住民高出1.2倍，其中，阿里山鄒族人口僅存6, 840人，在十四族中為排名第九，在照護這樣高死亡率的少數民族，實需我們給予醫療關注及善終照護。善終是疾病末期照顧追求之主要目標，而對於善終有清楚的認識，則是提供善終照顧之起點。然而，台灣促進善終的困境，缺少系統性文獻的探討，台灣十四族原住民包括鄒族善終的相關研究，至今更不明朗。
阿里山鄒族有著傳統神靈信仰、生死觀及宗教，並長期接受某區域教學醫院現代化醫療照護。此外，有關阿里山鄒族住民對善終的概念、困境、所需協助、對醫療團隊的建議與期望，以及如何結合區域教學醫院的醫療照護，至今仍所知有限，也是今日醫療人員照護阿里山鄒族住民所面對的重要挑戰。
研究目的
本研究之研究目的有：
一、探討阿里山鄒族住民對善終的概念。
二、探討達到阿里山鄒族住民善終的困境及所需協助。
三、探討阿里山鄒族住民對醫療團隊如何協助其善終的建議與期望。

研究方法
本研究採探索性質性研究，藉由台灣南部某區域教學醫院協助認識阿里山鄒族住民，以立意取樣法收案。以半結構式訪談指引進行面對面深入訪談，每次訪談約50-120分鐘，內容再以質性內容分析法進行深入分析。
研究結果
　　本研究共訪談18位個案，其中6位男性，12位女性。年齡介於
28～78歲（mean + SD = 57.1 ± 15.1）。14位已婚、2為喪偶、1位再婚及1位未婚。身體狀況只有3位自覺健康，其餘均有內外科相關疾病。其主要照顧者有11位為配偶，其他為兒子（n = 3），媳婦（n = 2），表哥（n = 1）、或姐姐（n = 1）。3位有大學/大專以上學歷。個人平均月收入方面，介於0～NT $ 60,000元（mean + SD = NT $27,194.4 + 17,760.0元）。宗教信仰方面，10位天主教、4位基督教、3位鄒族傳統信仰、1位無宗教信仰。
　　研究結果發現，阿里山鄒族住民對善終的概念主要內容包括：（一）靈魂得前往好歸所，靈性得到安適；（二）部落是我終生家，落葉一定要歸根；（三）使用結合鄒文化與自己宗教信仰的喪葬儀式；（四）有鄒族部落的精神支持；（五）自我價值受部落族人肯定，擁有尊嚴；及（六）減少往生前身心靈與疾病痛苦。
　　善終的困境方面，可由四階段進行了解。在phase I的主要困境為：（1）缺乏維持健康、安全的生活型態（n = 16, 88.9%）、與
（2）對文化禁忌缺乏嚴謹遵守（n = 10, 55.6%）。從phase I延伸到phase II的主要困境為：（1）缺乏家人完善溝通與照顧（n = 9, 50.0%）、與（2）缺乏完善山區醫療照護（n = 8, 44.4%）。從phase IV的主要困境為：族人哀傷過程難以療癒（n = 12, 66.7%）。從phase I延伸到phase III主要困境為：（1）對西方現代化保健醫療知識不足（n = 17, 94.4%）、與（2）地理偏遠、交通極為不便（n = 14, 77.8%）。從pahse I延伸到phase IV的主要困境為：（1）經濟負荷過重（n = 11, 61.1%）、（2）個人價值不受部落族人肯定（n = 6, 33.3%）、與（3）病家對宗教信仰的信心度不足（n = 9, 50.0%）。
　　在所需協助方面，得知於phase I之主要需求為：族人健康狀況獲得監控（n = 6, 33.3%）。於phase II之主要需求為：延長生命的盼望（n = 9, 50.0%）。從phase I延伸到phase II之主要需求為：現代醫療知識的提供（n = 12, 66.7%）。從phase I延伸到phase III之主要需求為：（1）更強化的山區醫療照護（n = 8, 44.4%）、與（2）更方便的山際間交通（n = 8, 44.4%）。從phase II延伸到phase IV之主要需求為：更完善的身心照顧（n = 14, 77.8%）。從phase I延伸到phase IV之主要需求為：（1）經濟負擔獲得協助（n = 11, 61.1%）、（2）敬虔宗教信仰的支持（n = 12, 66.7%）、與（3）找回在部落的尊嚴（n = 8, 44.4%）。
　　在建議與期望方面，得知瞭解、遵守鄒文化祭典及儀式（n = 8, 44.4%）的建議出現在phase I。強化治療及健康知識（n = 8, 44.4%）的建議出現在從phase I延伸到phase II，而於phase IV又出現。
（1）減低疾病疼痛（n = 8, 44.4%）、與（2）協助盡早預立醫囑、回家往生（n = 17, 94.4%）的建議出現在從phase II延伸到phase III。
（1）提供道路阻斷時的交通資源（n = 8, 44.4%）、與（2）強化山區醫療照護及醫病關係（n = 7, 38.9%）的建議出現在從phase I延伸到phase III。（1）善用家族、部落力量幫助病家（n = 8, 44.4%）、與
（2）提供專業心理輔導師（n = 7, 38.9%）的建議出現在從phase II延伸到phase IV。最後，（1）減低經濟負荷（n = 12, 66.7%）、與
（2）倚賴宗教獲靈性安適、導向善終（n = 8, 44.4%）的建議出現在從phase I延伸到phase IV。
結論
　　有關阿里山鄒族住民對善終的概念，如何達到阿里山鄒族住民善終的困境、所需協助、以及對醫療團隊如何協助其善終的建議與期望，在本研究中首次較完整而深入的探討。本研究亦深入探討阿里山鄒族住民特有傳統社會結構、神靈信仰、宗教及生死觀，與其對善終之獨特概念。同時，亦針對促進阿里山鄒族住民善終，將有的困境、所需協助，提出具體建議。希能透將此研究結果，提供未來醫療團隊結合區域教學醫院、社區機構及教會資源的努力，對在照顧鄒族等原住民朋友時，不論在病人平時或生命末期，能及早察覺通往善終道路的諸多困境，給予適時、適當的協助，促進全人、全家、全程、全隊、全社區之五全照護。

Research Background
In 2009, aboriginal people’s Crude Death Rate (CDR) of top ten causes of death was 1.2 times higher than non-aboriginal people. The population of Alisan Tsou remains only 6,840 and ranked ninth among fourteen Taiwan aboriginal tribes. With this high death rate, health care professionals (HPs) should provide this minority more medical attentions and good-dying care. Good-dying is the main goal of terminal patient’s care, and understanding concepts of good-dying is the beginning of providing its care. However, there is few systematical researches about dilemmas of promote good-dying care in Taiwan. Research about good-dying of fourteen aboriginal tribes in Taiwan including Tsou is even rarer.
Alisan Tsou has traditional godly belief, life-death values, and religions. They also have received modern medical services from Southern Taiwan Regional Teaching Hospital (STRTH) for years. Nevertheless, Alisan Tsou’s perspectives, dilemmas, needs, and expectations of achieving good-dying, and the way to integrate medical services of STRTH and community health care systems were rarely kown. Yet, it is a significant challenge for today HP to provide care for Alisan Tsou residents.
Research Objectives
Aims of this study were to explore:
1. Alisan Tsou’s perspectives of good-dying.
2. Dilemmas and needs of achieving Alisan Tsou’s good-dying.
3. Suggestions and expectations for HP to assist Alisan Tsou people to
achieving good-dying.
Research Method
An explorative qualitative research method was used in this study. An Alisan Tsou resident was introduced by STRTH for purposive sampling. Data was collected through semi-structured face-to-face in-depth interviews (50-120 minutes every time), and then analyzed by qualitative content analysis.
Research Results
Eighteenth participants in this study contained 6 males and 12 females. Their age ranged from 28 to 78 years old (mean + SD = 57.1 ± 15.1). 14 participants were married, 2 were widowed, 1 was re-married, and 1 remained single. 3 participants reported to have good health condition, the others had chronic diseases. 11 of their primary caregivers were spouses, the others’ were sons (n = 3), daughter-in-law (n = 2), cousin (n = 1), and sister (n = 1). 3 of their educational status were colleges. The personal average monthly income ranged from from NT $0~60,000 (mean + SD = NT $ 27,194.4). As for religion status, 10 of the participants were Catholic, 4 were Christian, 3 believe Tsou’s traditional godly belief, and 1 had no religion.
The contents of Alisan Tsou’s perspectives of good-dying were:
(1) Spirit leave for good places and obtain spiritual well-being; (2) Tribe is my destined home and must die at home; (3) Performing funeral rituals combined of Tsou’s culture and personal religions; (4) Having psychosocial support from tribe people; (5) Personal values affirmed by tribe people and having dignity; and (6) Decreasing physical, psycho-spiritual pain and sufferings before death.
For the dilemmas of achieving good-dying, dilemmas at phase I were: (1) lack of healthy, safe pattern of life (n = 16, 88.9%); and (2) lack of strict obedience to culture taboos (n = 10, 55.6%); dilemmas from phase I to phase II were: (1) lack of families’ comprehensive communication and care (n = 9, 50.0%); and (2) lack of comprehensive community medical services (n = 8, 44.4%); dilemma at phase IV was: difficulty of bereaved families’ recovery from grieving (n = 12, 66.7%); dilemmas from phase I to phase III were: (1) lack of western modern medical and healthy knowledge (n = 17, 94.4%); and (2) long distances of location and inconvenience of transportation (n = 14, 77.8%); dilemmas from phase I to phase IV were: (1) heavy burden of financial status (n = 11, 61.1%); (2) lack of tribe residents’ approval for their personal value (n = 6, 33.3%); and (3) patients and family lack of sufficient faith from their religions (n = 9, 50.0%).
For the needs of achieving good-dying, the need at phase I was: surveillance of health stamen (n = 6, 33.3%); need at phase II was: hope for extend their life (n = 9, 50.0%); need from phase I to phase II was: provide modern medical knowledge (n = 12, 66.7%); needs from phase I to phase III were: (1) stronger community medical services (n = 8, 44.4%); and (2) more convenient transportation (n = 8, 44.4%); need from phase II to phase IV was: more comprehensive physical and mental care (n = 14, 77.8%); needs from phase I to phase IV were: (1) assistance with financial burden (n = 11, 61.1%); (2) spiritual support from reverent religions (n = 12, 66.7%); and (3) retrieve dignity in the tribe (n = 8, 44.8%).
For the suggestion to attaing good-dying, suggestion at phase I was: understanding and obedience of Tsou’s culture ceremonies and rituals (n = 8, 44.4%); suggestion from phase I to phase plus phase IV was: improving treatment and health knowledge (n = 8, 44.4%); suggestions from phase II to phase III were: (1) reducing disease pain (n = 8, 44.4%); and (2) early in helping performing advanced care planning (ACP) and passing away at home (n = 17, 94.4%); suggestions phase I to phase III were: (1) provide transportations as roads blocked (n = 8, 44.4%); and
(2) improving community medical care and nurse-patients relationships (n = 7, 38.9%); suggestions from phase II to phase IV were:
(1) reinforcing families and tribe’s power to help patients and family (n = 8, 44.4%); and (2) providing professional psychologists (n = 7, 38.9%); suggestions from phase I to phase IV: (1) reducing financial burden (n = 12, 66.7%); and (2) relying on religion to obtain spiritual well-being and converting to good-dying (n = 8, 44.4%).
Research Conclusions
Alisan Tsou’s perspectives, dilemmas, needs, and expectations of good-dying, were first comprehensively explored in this study. We investigated Alisan Tsou’s particular traditional social structure, godly belief, religions, life-death values, and their unique perspectives of good-dying. Meanwhile, suggestions of dillemas and needs of achieving Alisan Tsou’s good-dying were also offered. It’s hoped that this research results will help future HP to realize the ways of combining the resources of regional hospital, community organizations, and churches as caring Tsou or other aboriginal people. We’ll be able to earlier detect various dilemmas of achieving good-dying, and provide them prompt and appropriate help from usual time to end-of-life phase, and lastly, to provide them “5W care” – whole person, whole family, whole course, whole team, and whole community care.

致謝.......................................................I
中文摘要...................................................II
英文摘要..................................................VII
目錄....................................................XIII
圖目錄....................................................XVI
表目錄...................................................XVII
第壹章 緒論................................................1
第一節 研究動機與背景........................................1
第二節 研究問題.............................................4
第三節 研究目的.............................................5
第四節 名詞界定.............................................6第貳章 文獻查證.............................................9
第一節 阿里山鄒族的簡介及社會權力結構...........................9
第二節 阿里山鄒族的神靈信仰及生死觀............................18
第三節 善終的相關概念及當今執行困境............................27
第四節 達到阿里山鄒族善終的困境...............................40
第參章 研究方法............................................49
第一節 研究設計............................................49
第二節 研究對象及場所.......................................57
第三節 研究工具............................................60
第四節 資料收集過程.........................................61
第五節 資料分析方法.........................................63
第六節 研究嚴謹度...........................................66
第七節 研究倫理考量.........................................69
第肆章 研究結果............................................71
第一節 阿里山鄒族住民的基本資料...............................72
第二節 阿里山鄒族住民對善終的概念..............................76
第三節　達到阿里山鄒族住民善終的困境...........................110
第四節 達到阿里山鄒族住民善終所需的協助........................176
第五節 達到阿里山鄒族住民善終的建議與期望......................208
第伍章 討論..............................................260
第一節 阿里山鄒族住民於各善終階段達到善終的困境、所需協助、建議與期望概
念架構圖...........................................261
第二節 阿里山鄒族住民對善終的概念之探討........................286
第三節 達到阿里山鄒族住民善終的困境之探討......................297
第四節 達到阿里山鄒族住民善終所需的協助之探討...................309
第五節 達到阿里山鄒族住民善終的建議與期望之探討.................318
第陸章 結論與建議..........................................323
第一節　研究結論............................................323
第二節　研究限制............................................327
第三節　研究建議............................................329
參考文獻..................................................339
中文部分..................................................339
英文部分..................................................345
研究附錄..................................................362
附件一 個案基本資料........................................362
附件二 研究同意書..........................................363
附件三 半結構式訪談指引.....................................366
附件四 研究進度甘特圖......................................367

圖目錄
圖一 台灣阿里山南三村鄒族住民進行預立醫療計畫的困境概念架構圖.......48
圖二 研究進行流程圖.........................................62
圖三 阿里山鄒族住民於各階段的善終困境概念架構圖.................274
圖四 阿里山鄒族住民於各階段善終的所需協助概念架構圖..............275
圖五 阿里山鄒族住民於各階段善終的建議與期望概念架構圖............276
圖六 阿里山鄒族住民於各階段的善終困境與所需協助架構圖............285
圖七 阿里山鄒族住民對善終的概念架構圖.........................296
圖八 阿里山鄒族住民於各階段的善終困境與導向善終之所需協助架構圖....317

表目錄
表一　2009年原住民族與非原住民族主要死因粗死亡率之比較.............12
表二 個案人口學基本資料一覽表.................................73
表三 個案人口學基本資料總數表.................................75
表四　阿里山鄒族住民對善終的概念意義單元一覽表...................107
表五　達到阿里山鄒族住民善終的困境意義單元一覽表..................170
表六　達到阿里山鄒族住民善終所需的協助意義單元一覽表..............205
表七　達到阿里山鄒族住民善終的建議與期望意義單元一覽表.............254
表八　阿里山鄒族住民於各階段達到善終的困境、所需協助與建議一覽表.....278
表九 阿里山鄒族住民促進善終衛教單張－病人與家屬篇................332
表十 阿里山鄒族住促進善終衛教單張－醫療團隊篇...................333

中文部分
中華民國內政部（2012）．民國100年11月戶口統計資料分析，2012年12月30日取自http://www.moi.gov.tw/chi/chi_news/news_detail.aspx?type_code=01&sn=5871。
王嵩山（2001）．台灣原住民的社會與文化．台北：聯經。
王嵩山（2003）．過去就是現在：當代阿里山鄒族文化形式的社會建構．台北：稻鄉。
王嵩山（2004）．鄒族．台北三民。
王嵩山（2007）．阿里山鄒族的歷史與政治．台北：稻鄉。
王嵩山（1995）．阿里山鄒族的社會與宗教生活．台北: 稻鄉。
王嵩山（2001）．台灣原住民的社會與文化．台北: 聯經。
王嵩山（2003）．過去就是現在：當代阿里山鄒族文化形式的社會建構．台北: 稻鄉。
王嵩山（2007）．阿里山鄒族的歷史與政治．台北: 稻鄉。
王嵩山、汪明輝、浦忠成（2001）．台灣原住民史︰鄒族史篇．南投: 省文獻會。
王嵩山、汪明輝、浦忠成（2001）．台灣原住民史：鄒族史篇．南投：省文獻會。
方慧芬、張慧玉、林佳靜（2009）．末期病人面臨預立醫囑、生前預囑之現況及與生命自決之倫理議題．護理雜誌，5（1），17-22。
巴蘇亞．博伊哲努（1997）．庫巴之火；台灣鄒族部落神話研究．台中：晨星。
巴蘇亞．博伊哲努（浦忠成）（1999）．台灣鄒族的風土神話．台北：臺原。
巴蘇亞．博伊哲努（浦忠成）、浦忠勇、亞柏甦詠（2004）．「原」氣淋漓的文化論辯－鄒族兄弟的沈思．台北: 黎明。
巴穌亞．迪亞卡納 （2007）．鄒族：復仇的山豬．台北：新自然主義。
巴蘇亞．博伊哲努 （1997）．庫巴之火；台灣鄒族部落神話研究．台中：晨星。
巴蘇亞．博伊哲努 （浦忠成）（1999）．台灣鄒族的風土神話．台北：臺原。
巴蘇亞．博伊哲努 （浦忠成）、浦忠勇、亞柏甦詠 （2004）．「原」氣淋漓的文化論辯－鄒族兄弟的沈思．台北：黎明。
石世明（2008）．悲傷輔導新觀念－從心靈成長到悲傷轉化．腫瘤護理雜誌，8（1），27-33。
台灣安寧照顧協會（2011）．安寧緩和醫療條例，2011年8月25日取自http://www.tho.org.tw/home/index.php?f=contentShow&id=1216。
台灣安寧照顧基金會（2011a）．100年度南區「預立醫療自主計劃」（Advance Care Planning）專業人員教育訓練研習會，2011年8月25日取自http://www.hospice.org.tw/2009/chinese/index.php。
台灣安寧照顧基金會（2011b）．安寧歷年大事紀，2011年8月25日取自http://www.hospice.org.tw/2009/chinese/twenty/main2.html。
台灣安寧照顧基金會（2011c）．對於生死，你的態度是什麼？ -- 預立醫療自主計畫（Advance care planning），2011年8月25日取自http://www.hospice.org.tw/2009/chinese/twenty/main2.html。
行政院原住民族委員會（2011a）．原住民族簡介－原住民族分佈，2011年10月30日取自http://www.apc.gov.tw/portal/docList.html?CID=6726E5B80C8822F9。
行政院原住民族委員會（2011b）．98年原住民族人口及健康狀況統計年報，2011年10月30日取自http://www.apc.gov.tw/portal/docDetail.html?CID=217054CAE51A3B1A&DID=0C3331F0EBD318C2B601128FD956E853。
行政院原住民族委員會（2012）．原住民族簡介－鄒族，2012年12月30日取自http://www.apc.gov.tw/portal/docList.html?CID=F07B48DFDA79CF95。
行政院衛生署（2011）．「安寧緩和醫療條例修正案」報告，2011年10月30日取自http://203.65.100.154/CHT2006/DM/DM2_p01.aspx?class_no=217&now_fod_list_no=5939&level_no=1&doc_no=78692。
交通部觀光局阿里山國家風景區管理處（2005）．親近鄒族．嘉義: 阿里山國家風景區管理處。
安寧照顧基金會（2011）．現有合約醫院，2011年8月25日取自http://www.hospice.org.tw/2009/chinese/hospital.php。
法務部全國法規資料庫（2011）．安寧緩和醫療條例，2011年8月25日取自http://law.moj.gov.tw/LawClass/LawAll.aspx?PCode=L0020066
依憂樹．博伊哲努（浦忠勇）（1997）．台灣鄒族生活智慧．台北：常民。
吳風鈴、陳慶餘、謝博生（2011）．社區善終照護準備計劃．臺灣醫學， 15（1），22-31。
胡文郁、楊嘉玲（2009）．生命末期之病情告知與預立照護計畫．護理雜誌，56（1），23-28。
侯升雍（2012）．協助一位癌末個案獲得善終的護理經驗. 嘉基護理, 12（1）, 24-34。
陳亭儒、胡文郁（2011）．善終之概念分析．長庚護理， 22（1）， 45-52.
達西烏拉彎．畢馬（田哲益）（2003a）．台灣的原住民－鄒族．台北：臺原。
達西烏拉彎．畢馬（田哲益）（2003b）．鄒族神話與傳說．台中：晨星。
達西烏拉彎．畢馬（田哲益）（2007）．認識台灣原住民族－與神木輝映的阿里山民族－鄒族．台北：台灣原住民族文化產業發展協會。
達西烏拉彎．畢馬（田哲益）、亞磊絲．泰吉華坦．（2007）．認識台灣的原住民族－為什麼要認識台灣原住民族－總論．台北：台灣原住民族文化產業發展協會。
達西烏拉彎．畢馬 （田哲益) （2003）．台灣的原住民－鄒族．台北：臺原。
張慧玉（2009）．探討終末病患照護中有關預立醫囑、生前預囑之現況及倫理法律問題．未發表碩士論文，台北：台北醫學大學護理學研究所。
曾淑倩、余美嬅、謝伶瑜、陳鼎達（2009）．南部某區域醫院醫療從業人員簽署預立醫囑之意願探討．安寧療護雜誌，14（2），141-155。
賴和賢、邱泰源、胡文郁、張皓翔、姚建安、陳慶餘（2005）．善終服務之文獻複查．安寧療護雜誌， 10（2），174-185。
楊婉萍（2010）．熟年時代／身後事 講清楚 聯合報。
楊嘉玲、陳慶餘、胡文郁（2008）．醫療預立指示．安寧療護雜誌，13（1），30-41。
嘉義縣阿里山鄉戶政事務所 （2011）．人口統計：原住民人口數，2011年10月30日取自http://www.alishan-house.gov.tw/population/index-6.asp?Parser=99,6,40。
蔡甫昌、潘恆嘉、吳澤玫、邱泰源、黃天祥 （2006）．預立醫療計畫之倫理與法律議題．臺灣醫學，10（4），517-536。
黎筱圓 （2006）．幽谷伴行中的生死兩無憾－談臨終關懷與安寧療護. 安寧療護雜誌，11（2），175-182。
劉樹泉、沈莉真、江維鏞、王志嘉 （2006）．民眾對安寧護態度調查初探．安寧療護雜誌，11（3），242-251。
謝伶瑜、林淑英 （2010）．洗腎室護理人員推行預立醫囑觀點之前驅性研究. 護理雜誌， 57（4），59-67。
釋普安、洪壽宏、黃建勳、彭仁奎、游碧真、陳慶餘（2011）．居家善終靈性照顧．安寧療護雜誌，16（1）， 82-94。

英文部分
Abbo, E. D., Sobotka, S., & Meltzer, D. O. (2008). Patient preferences in instructional advance directives. Journal of Palliative Medicine, 11(4), 555-562.
American Cancer Society. (2011a). Types of advance directives. Retrieved August 25th, 2011, from http://www.cancer.org/Treatment/FindingandPayingforTreatment/UnderstandingFinancialandLegalMatters/AdvanceDirectives/advance-directives-types-of-advance-health-care-directives
American Cancer Society. (2011b). What is an advance directive? Retrieved August 25th, 2011, from http://www.cancer.org/Treatment/FindingandPayingforTreatment/UnderstandingFinancialandLegalMatters/AdvanceDirectives/advance-directives-what-is-an-advance-health-care-directive
American Cancer Society, & National Comprehensive Cancer Network. (2008). Palliative care: Advance directives (Advance care planning). Advanced cancer and palliative care - treatment guidelines for patients. Retrieved August 25th, 2011, from http://pacificcancer.org/Resources/Cancer/Palliative/NCCN_Palliative_Care_Guidelines.pdf
American Hospice Foundation. (2010). Medical issues to be considered in advance care planning. Retrieved August 25th, 2011, from http://www.americanhospice.org/articles-mainmenu-8/advance-care-planning-mainmenu-9/46-medical-issues-to-be-considered-in-advance-care-planning
Arizona Nurse. (2008). Have you taken time to prepare an advance directive? Arizona Nurse, 61(2), 17-17.
Badger, F. J., Shaw, K. L., Hewison, A., Clifford, C., & Thomas, K. (2010). Gold Standards Framework in Care Homes and advance care planning. Palliative Medicine, 24(4), 447-448.
Barrio-Cantalejo, I. M., Molina-Ruiz, A., Simón-Lorda, P., Cámara-Medina, C., Toral López, I., Del Aguila, M. D. M., et al. (2009). Advance directives and proxies' predictions about patients' treatment preferences. Nursing Ethics, 16(1), 93-109.
Berger, J. T. (2010). What about process? Limitations in advance directives, care planning, and noncapacitated decision making. American Journal of Bioethics, 10(4), 33-34.
Besirevic, V. (2010). End-of-life care in the 21st century: Advance directives in universal rights discourse. Bioethics, 24(3), 105-112.
Born, W., Greiner, K. A., Sylvia, E., Butler, J., & Ahluwalia, J. S. (2004). Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. Journal of Palliative Medicine, 7(2), 247-256.
Brown, B. A. (2003). The history of advance directives. A literature review. Journal of Gerontological Nursing, 29(9), 4-14.
Cairns, R. (2011). Advance care planning: thinking ahead to achieve our patients' goals. British Journal of Community Nursing, 16(9), 427-427.
Canadian Cancer Society. (2011). The end of life project: Advance directives. Retrieved August 25th, 2011, from http://as01.ucis.dal.ca/dhli/cmp_advdirectives/default.cfm?
Canadian Hospice Palliative Care Association. (2011). Advance care planning in Canada: A national framework and implementation (ACP Project). Retrieved August 25th, 2011, from http://www.chpca.net/acp_what_is_advance_care_planning
Carr, D., & Khodyakov, D. (2007). End-of-life health care planning among young-old adults: An assessment of psychosocial influences. Journals of Gerontology Series B-Psychological Sciences & Social Sciences, 62(2), S135-141.
Chan, H. Y., & Pang, S. M. (2010). Let me talk -- an advance care planning programme for frail nursing home residents. Journal of Clinical Nursing, 19(21/22), 3073-3084.
Chen, C. Y. (2010). Meeting the challenges of elder care in Taiwan's aging society. Journal of Clinical Gerontology and geriatrics, 1, 2-4.
Chio, C. C., Shih, F. J., Chiou, J. F., Lin, H. W., Hsiao, F. H., & Chen, Y. T. (2008). The lived experiences of spiritual suffering and healing process among Taiwanese patients with terminal cancer. Journal of Clinical Nursing, 17, 735-743.
Crawley, L., Payne, R., Bolden, J., Payne, T., Washington, P., & Williams, S. (2000). Palliative and end-of-life care in the African American community. the Journal of the American Medical Association, 284(19), 2518-2521.


Davison, S. N. (2006). Facilitating advance care planning for patients with end-stage renal disease: The patient perspective. Clinical Journal of the American Society of Nephrology, 1(5), 1023-1028.
Davison, S. N. (2008). Advance care planning in chronic illness. Journal of Palliative Medicine, 11(2), 243-244.
Davison, S. N. (2009). Advance care planning in patients with end-stage renal disease. Progress in Palliative Care, 17(4), 170-178.
Davison, S. N., & Torgunrud, C. (2007). The creation of an advance care planning process for patients with ESRD. American Journal of Kidney Diseases, 49(1), 27-36.
Degenholtz, H. B., Rhee, Y., & Arnold, R. M. (2004). Brief communication: the relationship between having a living will and dying in place. Annals of Internal Medicine, 141(2), 113.
Del Vecchio, L., & Locatelli, F. (2009). Ethical issues in the elderly with renal disease. Clinics in Geriatric Medicine, 25(3), 543-553.
Department of Health, Social Care Institute for Excellence (2011). Advance care planning – planning for the future. Retrieved August 25th, 2011, from http://www.advancecareplanning.org.uk


Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. Brithsh Medical Journal, 340, c1345.
Dobalian, A. (2006). Advance care planning documents in nursing facilities: Results from a nationally representative survey. Archives of Gerontology & Geriatrics, 43(2), 193-212.
Douglas, R., & Brown, H. N. (2002). Patients' attitudes toward advance directives. Journal of Nursing Scholarship, 34(1), 61-65.
Dow, L. A., Matsuyama, R. K., Ramakrishnan, V., Kuhn, L., Lamont, E. B., & Lyckholm, L., et al. (2010). Paradoxes in advance care planning: The complex relationship of oncology patients, their physicians, and advance medical directives. Journal of Clinical Oncology: The Journal of American Society of Clinical Oncology, 28(2), 299-304.
Fabrega, H. J. (2004). Culture and the origins of psychopathology. In U. P. Gielen, J. M. Fish, & J. G. Draguns (Eds.), Handbook of Culture, Therapy and Healing (pp. 15-36): Mahwah, NJ: Erlbaum.


Fried, T. R., Bullock, K., Iannone, L., & O'Leary, J. R. (2009). Understanding advance care planning as a process of health behavior change. Journal of the American Geriatrics Society, 57(9), 1547-1555.
Garand, L., Dew, M. A., Lingler, J. H., & DeKosky, S. T. (2011). Incidence and predictors of advance care planning among persons with cognitive impairment. American Journal of Geriatric Psychiatry, 19(8), 712-720.
Giger, J. N., Davidhizar, R. E., & Fordham, P. (2006). Multi-cultural and multi-ethnic considerations and advanced directives: Developing cultural competency. Journal of Cultural Diversity, 13(1), 3-9.
Green, B. L. (2010). Culture is treatment: Considering pedagogy in the care of aboriginal people. Journal of Psychosocial Nursing & Mental Health Services, 48(7), 27-34.
Green, M. J., & Levi, B. H. (2009). Development of an interactive computer program for advance care planning. Health Expectations, 12(1), 60-69.



Hammes, B. J., Rooney, B. L., & Gundrum, J. D. (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatrics Society, 58(7), 1249-1255.
Hirschman, K. B., Corcoran, A. M., Straton, J. B., & Kapo, J. M. (2010). Advance care planning and hospice enrollment: Who really makes the decision to enroll? Journal of Palliative Medicine, 13(5), 519-523.
Holman, D., & Hockley, J. (2010). Advance care planning -- The 'what', the 'why', the 'how and when' – A UK perspective. Singapore Nursing Journal, 37(4), 10.
Hopp, F. P., & Duffy, S. A. (2000). Racial variations in end-of-life care. Journal of the American Geriatric Society, 48(6), 658-663.
Hsiao S. M., Gau M. L., Ingleton C., Ryan T., Shih F. J. (2011). An exploration of spiritual needs of Taiwanese patients with advanced cancer during therapeutic processes. Journal of Clinical Nursing, 20(7-8), 950-959


Huang, C. H., Hu, W. Y., Chiu, T. Y., & Chen, C. Y. (2008). The practicalities of terminally ill patients signing their own DNR orders -- A study in Taiwan. Journal of Medical Ethics, 34(5), 336-340.
Jezewski, M. A., Meeker, M. A., & Schrader, M. (2003). Voices of oncology nurses: what is needed to assist patients with advance directives. Cancer Nursing, 26(2), 105-112.
Johnson, K. S., Elbert-Avila, K. I., & Tulsky, J. A. (2005). The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. Journal of the American Geriatrics Society, 53(4), 711-719.
Johnson, K. S., Kuchibhatla, M., & Tulsky, J. A. (2008). What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of the American Geriatrics Society, 56(10), 1953-1958.
Johnson, R. W., Newby, L. K., Granger, C. B., Cook, W. A., Peterson, E. D., & Echols, M., et al. (2010). Differences in level of care at the end of life according to race. American Journal of Critical Care, 19(4), 335-344.
Juntunen, A. (2003). Baridi -- The culture-bound syndrome among the Bena in the Tanzanian village of Ilembula. Hoitotiede, 15(5), 223-232.
Juntunen, A. (2005). Baridi: A culture-bound syndrome among the Bena peoples in Tanzania. Journal of Transcultural Nursing, 16(1), 15-22.
Kataoka-Yahiro, M. R., Conde, F. A., Wong, R. S., Page, V., & Peller, B. (2010). Advance care planning among Asian Americans and Native Hawaiians receiving haemodialysis. International Journal of Palliative Nursing, 16(1), 32-40.
Killick, S., Pharaoh, A., & Randall, F. (2010). Advance care planning in care homes. Palliative Medicine, 24(4), 445-446.
Kim, S., & Lee, Y. (2003). Korean nurses' attitudes to good and bad death, life-sustaining treatment and advance directives. Nursing Ethics, 10(6), 624-637.
Kurella Tamura, M., Goldstein, M. K., & Perez-Stable, E. J. (2010). Preferences for dialysis withdrawal and engagement in advance care planning within a diverse sample of dialysis patients. Nephrology Dialysis Transplantation, 25(1), 237-242.
Lacey, D. (2006). End-of-life decision making for nursing home residents with dementia: a survey of nursing home social services staff. Health & Social Work, 31(3), 189-199.
Lamont, E. B., & Siegler, M. (2000). Paradoxes in cancer patients' advance care planning. Journal of Palliative Medicine, 3(1), 27-35.
Leininger, M., & McFarland, M. (Eds.). (2002). Transcultural Nursing: Concepts, Theories, Research, and Practice. New York: McGraw Hill.
Leininger, M., & McFarland, M. (Eds.). (2006). Culture Care Diversity & Universality: A Worldwide Nursing Theory (2nd ed.). Sudbury: MA: Jones & Bartlett.
Minto, F., & Strickland, K. (2011). Anticipating emotion: A aqulitative study of advance care planning in the community setting. International Journal of Palliative Nursing, 17(6), 278-284.
National Hospice and Palliative Care Organization. (2011a). Advance care planning: communicating your end-of-life wishes. American Hospice Foundation. (2010). Medical issues to be considered in advance care planning. Retrieved October 30th, 2011, from http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3278
National Hospice and Palliative Care Organization. (2011b). Advance directives. Retrieved October 30th, 2011, from http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3284
National Hospice and Palliative Care Organization. (2011c). Preparing Your Advance Directives. Retrieved October 30th, 2011, from http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3287
National Hospice and Palliative Care Organization. (2011d). Wear a white ribbon in march to raise awareness of advance care planning: "It's about how you live". Retrieved October 30th, 2011, from http://www.nhpco.org/i4a/pages/Index.cfm?pageID=4816
National Hospice and Palliative Care Organization. (2011e). What are advance directives? Retrieved October 30th, 2011, from http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3285
Pekmezaris, R., Breuer, L., Zaballero, A., Wolf-Klein, G., Jadoon, E., D'Olimpio, J. T., et al. (2004). Predictors of site of death of end-of-life patients: The importance of specificity in advance directives. Journal of Palliative Medicine, 7(1), 9-17.



Perkins, H. S., Geppert, C. M. A., Gonzales, A., Cortez, J. D., & Hazuda, H. P. (2002). Cross-cultural similarities and differences in attitudes about advance care planning. Journal of General Internal Medicine, 17(1), 48-57.
Robinson, L., Bamford, C., Beyer, F., Clark, A., Dickinson, C., Emmet, C., et al. (2010). Patient preferences for future care -- how can Advance Care Planning become embedded into dementia care: a study protocol. BioMed Central Geriatrics, 10, 2.
Rosnick, C. B., & Reynolds, S. L. (2003). Thinking ahead: factors associated with executing advance directives. Journal of Aging & Health, 15(2), 409-429.
Sadler, G. R., Lee, H.-C., Lim, R. S.-H., & Fullerton, J. (2010). Recruitment of hard-to-reach population subgroups via adaptations of the snowball sampling strategy. [Research Support, N.I.H., Extramural]. Nursing & Health Sciences, 12(3), 369-374.
Samanta, A., & Samanta, J. (2010). Advance care planning: the role of the nurse. British Journal of Nursing, 19(16), 1060-1061.



Shih, F. J., Lin, H. R., Gau, M. L., Chen, C. H., Hsiao, S. M., Shih, S. N., & Sheu, S. J. (2009). Spiritual needs of Taiwan’s older patients with terminal cancer. Oncology Nursing Forum, 36 (1), E31-E38.
Shih, S. N., Turale, S., Tsai, J. C., & Shih, F. J. (2010). Religiosity influences on bereavement adjustments of elderly widows in Taiwan. Journal of Clinical Nursing, 19, 856-866
Silveira, M. J., Kim, S. Y. H., & Langa, K. M. (2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine, 362(13), 1211-1218.
Sudore, R. L., & Fried, T. R. (2010). Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Annals of Internal Medicine, 153(4), 256-261.
Tamayo-Velazquez, M. I., Simon-Lorda, P., Villegas-Portero, R., Higueras-Callejon, C., Garcia-Gutierrez, J. F., Martinez-Pecino, F., et al. (2010). Interventions to promote the use of advance directives: An overview of systematic reviews. Patient Education & Counseling, 80(1), 10-20.



Tang, S. T., Chen, C. C. H., Tang, W. R., & Liu, T. W. (2010). Determinants of patient-family caregiver congruence on preferred place of death in Taiwan. Journal of Pain and Symptom Management, 40, 235-245.
Tapp, A. (2006). Legal matters. Advance directives. Canadian Nurse, 102(2), 26-26.
Thelen, M. (2005). End-of-life decision making in intensive care. Critical Care Nurse 25(6), 28-38.
Tulsky, J. A. (2005). Beyond adcance directives: Importance of communication skills at the end of life. JAMA: The Journal of the American Medical Association, 294(3), 359-365.
Vervaeke, H. K. E., Korf, D. J., Benschop, A., & van den Brink, W. (2007). How to find future ecstasy-users: Targeted and snowball sampling in an ethically sensitive context. Addictive Behaviors, 32(8), 1705-1713.
Wallace, S. K., Ewer, M. S., Price, K. J., & Feeley, T. W. (2002). Outcome and cost implications of cardiopulmonary resuscitation in the medical intensive care unit of a comprehensive cancer center. Supportive Care in Cancer, 10(5), 425-429.
Warner, J. P., Wright, L., Blanchardx, M., & King, M. (2003). The psychological health and quality of life of older lesbians and gay men: a snowball sampling pilot survey. International Journal of Geriatric Psychiatry, 18(8), 754-755.
Weng, H. J., Niu, D. M., Turale, S., Tsao, L. I., Shih, F. Jong., Yamamoto-Mitan, N., Chang, C. C., & Shih, F. J. (2012). Family caregiver distress with children having rare genetic disorders: A qualitative study involving Russell-Silver Syndrome in Taiwan. Journal of Clinical Nursing, 21(1-2), 160-169.
White, C. (2005). An exploration of decision-making factors regarding advance directives in a long-term care facility. Journal of the American Academy of Nurse Practitioners, 17(1), 14-20.
Wiener, L., Ballard, E., Brennan, T., Battles, H., Martinez, P., & Pao, M. (2008). How I wish to be remembered: The use of an advance care planning document in adolescent and young adult populations. Journal of Palliative Medicine, 11(10), 1309-1313.



Winter, L., Parks, S. M., & Diamond, J. J. (2010). Ask a different question, get a different answer: why living wills are poor guides to care preferences at the end of life. Journal of Palliative Medicine, 13(5), 567-572.
Woytkiw, T. D. (2010). Advance care planning. Canadian Nursing Home, 21(3), 13-17.
Yang, C. L., Chiu, T. Y., Hsiung, Y. F. Y., & Hu, W. Y. (2011). Which factors have the greatest influence on bereaved families' willingness to execute advance directives in Taiwan? Cancer Nursing, 34(2), 98-106.
Yung, V. Y., Walling, A. M., Min, L., Wenger, N. S., & Ganz, D. A. (2010). Documentation of advance care planning for community-dwelling elders. Journal of Palliative Medicine, 13(7), 861-867.
Zoucha, R., & Broome, B. (2008). Culture and diversity issues. The significance of culture in nursing: examples from the Mexican-American culture and knowing the unknown. Urologic Nursing, 28(2), 140-142.