失智症患者生命末期照顧模式之初探

研究目的：探討失智症患者生命末期之定義、介入時機與照顧策略，發展出符合失智患者需求並以善終為目的之生命末期照顧服務提供模式，提供臨床實務與政策面做為參考。研究方法：本研究採質性研究深度訪談法，訪談參與照顧的失智症病患家屬共9人，訪談內容為失智症患者患病過程的觀察、照顧經驗，以及對於安寧緩和療護服務的看法。結果：患者的衰退軌道呈現多樣性，且多數患者死亡前仍有明顯的認知功能，不符合現行安寧緩和服務之收案標準（CDR=5），對於失智症納入安寧緩和服務，家屬亦普遍不了解。結論：失智症因為(1)疾病的病期長卻不可逆；(2)雖被歸類為長期慢性疾病卻又呈現不穩定狀態；(3)患者年齡普遍較高且健康衰弱，疾病又往往發現得太晚；加上(4)照顧者及家屬缺少帶患者就醫的動力，以病期決定服務提供顯得不實際。故應廣義的將失智症定義為一種末期狀態，規劃以善終的照顧理念整合長期照顧與安寧緩和服務，包括：(1)預立醫療自主計畫；(2)社區照顧；(3)居家安寧療護；(4)機構照顧，給予完整的連續性照顧服務。

關鍵字

失智症（認知障礙症）；生命末期；善終；長期照顧；安寧緩和療護

並列摘要

Purpose: Explore the definition of end-of-life for patient of dementia, time of intervention and strategy of palliative care, and the development of service mode in compliance with the need of patient with dementia, in order to provide a reference for clinical practice and policy. Methods: The research employed qualitative approach by in-depth interview of 9 relatives of patients with dementia. The interview included observation over the course of disease, caring experience, and personal view on palliative care. Results: Many patients exhibited multiple forms of continuous deterioration in condition and most patients showed significant cognitive function before death, which disqualified them from palliative care program by the current standard (CDR=5). And, family members were generally not well-informed of the palliative care program for patient of dementia. Conclusions: Patients of dementia generally showed (1) long and irreversible course of disease; (2) classification as long-term chronic disease but with fluctuating disease condition; (3) old age and weaker in health, leading to late discovery of disease; (4) lack of seeking medical assistance by caretaker and family member; thus, it would be an unrealistic practice of providing service based on the term of disease. Therefore, dementia, in a broad sense, should be classified as end-of-life to plan a long-term palliative care program for a peaceful end for patient, including: (1) Advanced Care Planning (ACP); (2) Aged Care Community; (3) Palliative Care in Home; (4) Institutional Care, which could completely cover a continuous care for a patient.

並列關鍵字

dementia (major neurocognitive disorder) ； end-of-life ； good death ； long-term care ； hospice palliative care

參考文獻

Greg A. Sachs , Joseph W. Shega and Deon Cox-Hayley. Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine 2004 Oct; 19(10): 1057-63.