以行動研究促進長照機構高齡住民及家屬參與預立醫療照護諮詢

Abstract

【背景與目的】 目前，研究證據顯示目前臨床因某些因素，造成台灣安寧-緩和照護的服務落實於長照機構情形並不理想；因此，學者們提出在長照機構執行預立醫療照護諮商(Advance care planning, 以下簡稱ACP)和預立醫療指示文件(Advanced directives, 以下簡稱ADs)的簽署，不但可增加機構住民接受安寧緩和照護的機會以減少他們不適症狀，也可進一步達善終目的。然而，目前研究結果，卻呈現機構高齡住民對於ADs文件的簽署都呈現高意願低簽署率的矛盾現象。因此，本研究目的期能在長照機構，瞭解或發展以下相關議題和照護指引：1.瞭解機構高齡住民和其家屬難以啟齒或關注的議題；2.瞭解高齡住民和家屬面對生命晚年簽署預立醫療指示文件時，所遭遇的簽署難題；3.發展出提昇高齡住民對ADs的自主簽署率和/或家屬代理簽署率之ACP訪談指引與照護模式。 【方法】 本研究分兩階段進行資料收集，第一階段：採立意取樣，於東部長照機構，進行資料收集。首先以「圓滿人生-預立醫療自主計畫：給自己選擇最好的照護」讓高齡住民回顧其生命歷程，了解住民關於生命末期關注的議題、無法說出口的原因、以及簽署文件時所遇到的難題後，再給予介紹ADs與安寧療護的照護的內容。待住民訪談結束後，再與其家屬進行會談，了解家屬對生命末期難以啟齒之議題、無法啟齒的原因、以及簽署文件時所遇到的難題後，告知家屬其家人(高齡住民)對自身生命末期照護想法，最後介紹ADs與安寧療護的照護的內容。第二階段：以行動研究建立照護模式。接下來研究者與機構人員開會，根據行動研究法的四階段：確認問題、計劃、行動、和評值，確認每一對住民和家屬陳述關注之議題、說不出口的原因、及簽署文件遇到的難題為何，進行確認與討論，並決定如何修改照護指引模式之內容，以實施於下一對的住民與家屬，最後予以評值；而上述這種反覆回饋與修正的行動研究過程，共執行十次。此外，本研究也針對機構另一群意識不清住民之家屬，進行會談，以了解他們在面對意識不清高齡住民之生命末期時，難以啟齒之議題、原因、及簽署文件所遇到的難題；最後將這些會談資料轉成逐字稿，以內容分析法進行整理與分析。 【結果】 研究參與者包括長照機構高齡住民及家屬共30人。第一階段研究結果歸納出：1.預立照護諮詢過程中關注的議題：(1)高齡住民呈現五個主題為：賴活不如好死、想要好走、放下、擺脫或依循傳統文化、住民抉擇臨終地點。(2)意識清楚住民之家屬則呈現六個主題：終須一別、給他她/好走、順服住民決定、順從孝道文化與過去醫療經驗、心有餘而力不足、臨終地點家屬隨機緣選擇。(3)意識不清楚住民之家屬呈現五個主題為：終須一別、給他她/好走、擺脫孝道文化的枷鎖、心有餘而力不足、臨終地點家屬有所考量。2.預立照護諮詢過程中無法說出口的原因：(1) 高齡住民呈現四個主題：有所顧忌、不願碰觸生死議題、不能以自我為中心、徬徨。(2) 意識清楚住民之家屬呈現六個主題為：顧慮開啟死亡話題、時機未到，靜候適當時機、順從住民的步調、對未來無法做假設性決定、大局(家族)為重、自認無權討論。(3) 意識不清楚住民之家屬呈現五個主題為：無法溝通、有所顧慮、長期奮戰的打算、大局(家族)為重、自認無權討論。3.簽署預立醫療指示文件所遭遇的難題：(1) 高齡住民呈現五個主題為：不祥之兆、無能力、傳統文化的羈絆、不想面對簽署事實、個別需求未得到滿足。(2) 意識清楚住民之家屬呈現四主題為：住民決策、團體決策、無權決策、隨機決策。(3) 意識不清楚住民之家屬呈現三個主題為：團體決策、無權決策、隨機決策。 第二階段透過行動研究過程，機構人員與研究者在彼此平等關係下，共同討論與分享，行動中隨時反思。藉由與住民和家屬十次的反覆評值，以修正預立醫療照護諮詢過程步驟和指引內容。住民方面：1. 以生命回顧訪談指引「圓滿人生：預立醫療自主計畫」開啟話題；2. 以善終角度介紹ADs文件及安寧照護；3.協助住民完成ADs相關文件的簽署，並於每半年進行回顧，以確認住民生命末期照護意願。家屬方面：家屬方面：1. 以醫院安寧共照模式向家屬解釋住民目前疾病狀況以及對未來生活品質的影響，並向家屬說明住民對自己生命末期治療選擇的看法；2. 向家屬介紹預立指示文件與安寧療護相關生命末期照護的主題；3.協助家屬簽署住民ADs文件，並於簽署後每半年進行回顧，再次確認家屬意願有無改變。 【結論】 本研究結果顯示從機構高齡住民與家屬的角度了解他們在討論生命末期照護的問題、難以說出口的理由以及簽署文件的困難點後，透過行動研究，在長照機構，改善並隨時調整預立醫療諮商照護指引的內容。此指引不但可成為機構人員未來在機構執行預立醫療照護諮商的實務指引，也可促使高齡住民和家屬共同參與預立醫療諮商的過程，以提升機構高齡住民生命末期的生活與照護品質。

【Background and Purpose】 Currently, in Taiwan, the evidence shows hospice-palliative care services are poorly undertaken in long-term care facilities due to some clinical concern. Thus researchers recommended that implementing ACP or signning ADs not only can increase opportunities for older residents to have hospice-palliative care to decrease their discomfortable symptoms, but also can achieve the goal of good death. However, results have presented the contradictory phenomenon that the elderly in nursing home have the high rates of willingness but low rates to sign any kind of ADs. Therefore, the purpose of this study is to understand or develop related issues and guideline in long-term care facilities: 1. To learn what issues were older residents and their families felt unspeakable or concern; 2. To understand what difficulties did older residents and their families meet when they need to sign ADs; 3. To develop the ACP interview guideline and care model improve the rate of signing ADs in long-term care facilities. 【Methods】 Data collections were conducted into two stages. The first stage: the purposive sampling was adopted and data collection was done in the long-term care facility in the eastern of Taiwan. First, researcher used the interview tool of 'Complete life – ACP: to choose the best care for yourself ' to allow older residents to recall their life course and to understand what issues related to end-of-life care that older residents concerned. Later on, the content of ADs and hospice-palliative care would be introduced. After finishing interviews with older residents, the researcher would interview families to understand what issues related to end-of-life- care for older residents that families concerned and tell them what older residents thought about end-of-life care for themselves and introduce hospice-palliative care and ADs to families. The secondary stage: To establish the care model through the action research, the researcher would have meetings with the staff to identify the problem for each older resident and their family and to make a care plan and to be implemented to the next pair of older resident and their families, and finally to evaluate the result. This process as above continued a total of ten times. In addition, the unconscious residents’ families were also interviewed by the researcher. After completing each interview with older residents or their families, the researcher would listen to the record and type in the computer and turn into verbatim text, then, the content analysis would be used as a tool to analyze those data. 【Results】 There were 30 persons took part in this study. Results of the first stage were: 1. Issues of concerned during the process of ACP: (1) Five themes from older residents: let go of everything, want to have a good death, choice dying place, to die peacefully is better than to live miserably, follow or get rid of the traditional culture. (2) Six themes from families (conscious clear residents): need to say goodbye on one day, give them a good death, obey the decision from residents, follow the culture of filial piety or the past medical experience, hands are tied, and choice the dying place by fate. (3) Five themes from families (unconscious residents): need to say goodbye on one day, give them a good death, get rid of the shackle of Filial Piety culture, hands are tied, and choice the dying place for different concerns. 2. Reasons for unspeakable during the process of ACP: (1) Four themes from older residents: something to worry about, unwilling to touch issues of death, cannot be self-centered, and in a perplexing situation. (2) Six themes from families (conscious clear residents): fear of opening discussion of death, wait for the right time, keep in step with residents’, refuse to make hypothetical decision for the future, put the interests of the family above everything else, and have no right to discuss. (3) Five themes from families (unconscious residents): inability to communicate, something to worry about, prepare for taking care of older residents for a long time, put the interests of the family above everything else, and have no right to discuss. 3. Difficulties for Signing ADs: (1) Five themes from older residents: an inspired sign, inability to sign, the shackle of traditional culture, unwilling to face the fact of signing, individual needs unmet. (2) Four themes from families (conscious clear residents): decision-making by residents, decision-making by the family, have no right to make decisions, and decision-making by opportunity. (3) Three themes from families (unconscious residents): decision-making by the family, have no right to make decisions, and decision-making by opportunity. Results of the second stage, For older residents: 1. To start the interview with the interview guidelines named as ' Complete life – ACP: to choose the best care for yourself '; 2. To introduce the content of ADs documents and hospice care from the perspective of good death; 3. to assist older residents to sign these documents, and review them every six months. For families: 1. To explain to the families about the disease of older residents and the influence in the quality of life in the future; 2. To introduce the topic about end-of-life care; 3. To make the care plan with families for older residents together. Finally, to assist families to sign and review these documents every six months. 【Conclusions】 Results of this study showed that this guideline will not only become the guideline for implementing ACP process in long-term care facility, but also to promote older residents and their families to participate in the ACP process to improve the quality of life and care for older residents during their end-of-life.