探索主要家屬照護者對末期病人選擇安寧療護之經驗及決策過程

我國推動安寧療護的理念與服務，已30年，但是由於經費不足、照顧人力欠缺，成效並不理想。數據顯示國人死亡前一年內接受安寧療護服務之比率很低。當醫學技術已達極限，治癒疾病及延長生命已不可能時，末期病患卻無法享受到安寧的照顧，這是未來值得探索的議題。本研究專注於探討影響末期病人及其主要照護家屬選擇使用安寧療護服務的原因。本研究採取質性研究方法，使用深度訪談方式向六位研究對象進行資料蒐集；分析闡述主要照護家屬對安寧療護資訊的看法、末期病人選擇安寧療護的過程、及主要照護家屬在末期病人選擇安寧醫護決策過程中所扮演的角色。總而言之，本研究發現主要照護家屬不但是末期病人臨床決策的主導者，也在家人間發揮重要影響力，共同協助病人做出不留悔恨遺憾的醫療抉擇；醫師及醫療團隊若能誠實的將壞消息告知病人，且能與病家共同討論何時開始考慮安寧療護，建立醫病共享決策，就可讓更多末期病人有機會選擇安寧服務。本研究亦提出針對未來實務、研究及政策的具體建議，以作為未來政府政策及學術研究之參考。

關鍵字

安寧療護；臨終照顧；主要家屬照護者；醫療選擇；決策過程；末期病人；死亡；瀕死

並列摘要

The Republic of China government has been funding and promoting hospice and palliative care for the past 30 years, but recent statistics show that the number of terminally ill patients receiving hospice services in the year before death is very low. It’s apparent that many patients who have qualified for end-of-life care have not taken advantage of them, leading to the target population being underserved in this area. This may be a topic worth further research. This study focuses on exploring factors involved in the decision-making process of terminal patients and their primary family caregivers considering to opt for hospice care. This study adopts a qualitative research method and uses in-depth interviews to collect data from six research subjects; analyzes the information flows by which primary caregivers gain perspectives on available hospice services, the process of choosing hospice care for terminal patients, and the comprehensive roles of primary family caregivers in the decision-making process. Overall, this study found that primary caregivers of terminal patients are not only the main influencers in clinical decision-making, but also play a vital role in the family by keeping patients appraised of their care options; by aiding the family and patient to process unwelcome medical news and make informed and sound medical decisions. Additionally, this study found that the medical profession (doctors, nurses and hospitals, etc.) can do better in terms of fostering shared decision-making (SDM), informing terminal patients about the availability and benefits of hospice care, which would encourage more patients and families to choose hospice in end-of-life situations. This study also puts forward specific recommendations for future practice, research and policies, which will serve as references for future policies and academic research.