失智症患者生命末期照顧模式之初探

失智症好發於老年人身上，是一種進行性的認知功能損害，現階段仍無法完全預防和治癒，失智症人口正以每四秒一人的速度增加，加上未來的高齡、少子化趨勢，成為各國政策討論的重要議題。失智末期患者幾乎喪失所有表達和理解能力的同時，也失去內外在的自主性，普遍缺少討論醫療照顧計畫的習慣，很可能使之難以善終。安寧緩和療護是為了末期病人的善終權利而存在，但是失智病患之疾病特性與原本主要服務的癌症病患差異極大，在同樣的時間內，失智症患者礙於服務受限，與其他認知功能完整之病患所能接受的照顧產生明顯落差，不符安寧的理念價值和五全照顧概念，也浮現失智症生命末期定義狹隘的問題。故本研究目的為探討：(1)失智症患者之生命末期需求為何？(2)失智症患者之生命末期照顧的介入時機為何？(3)因應失智症患者之生命末期需求的照顧策略為何？本研究為質性研究，藉由深度訪談法，訪談參與照顧的失智症病患家屬共9人，選樣條件係從患者確診開始直到死亡，伴其歷經整個病程階段的家屬，即使委以他人照顧或入住機構，仍為主要決策且有密切關注，清楚了解病患的患病過程與變化，並參與末期時的醫療決策與過程，能夠掌握整體病程之家屬。研究發現失智症的確診與樣態，和文獻無太大差別，家屬對照顧過程的問題與因應大部分僅關注生理及社會層面，對於心理、靈性等內在需求則少有觀察。特別的是患者的衰退軌道呈現多樣性，病程有長短快慢，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)。結果認為，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，基於這些理由，失智症患者應有獨特的生命末期定義以「這是一種會持續惡化，最後導致死亡的疾病」視之，廣義的將失智症定義為一種末期狀態。分析家屬的訪談內容，研究者認為失智家庭需要的是以善終的照顧理念整合長期照顧與安寧緩和服務，規劃重點包括：(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

Dementia is common in elderly and is a progressive cognitive impairment, which cannot be completely prevented and cured. The number of people with dementia is increasing at a rate of one person every four seconds. With the future trend of aging society and low birth rate, the condition is a major issue for government policy around the world. At their terminal stage of dementia, patients generally lose all expressive and cognitive abilities, as well as both the intrinsic and the extrinsic autonomy. The lack of discussion on medical care program for this population may result in disastrous outcome for the society as a whole. The hospice palliative care is designed as a privilege for patients at end-of-life. However, the disease properties of these patients of dementia vary greatly from the originally intended population with caner, as limited by the service provided to care patients in dementia who obviously have totally different or partial cognitive function, they will not exactly be satisfied by the ideal of tranquility and its five circles of care. It certainly raises the question of definition and needs of a patient at end-of-life of dementia. Objectives: (1)Needs of a patient at the end-of-life of dementia. (2) The best time for intervention of palliative care for patients at palliative of dementia. (3)Strategy of palliative care program for patient at palliative of dementia. The study was a qualitative research. Through in-depth interview of 9 family relatives of dementia patients, the selection criteria would include family members who participated throughout the entire course of disease since diagnosis, even if they had entrusted patients to other caretakers or institutions, as they played key role in decision-making and continued to involve in patient's change of condition. These family relatives were in control of the entire medical care of patients. The diagnosis condition and presentation of dementia cases in the study were not different from references. Family members generally tended to patient's physiological and social condition and rarely extended to observe and care after internal needs in psychological or even spiritual aspect. Especially, many patients exhibited multiple signs of deterioration and some might be faster or slower than others. Most patients showed fair cognition function and thus, they were generally excluded from the current standard of palliative care program (CDR=5). Result showed the followings: (1) long and irreversible course of disease; (2) classification as long-term chronic disease but with fluctuating disease condition; (3) generally old age and weaker in health, leading to late discovery of disease; (4) lack of seeking medical assistance by caretaker and family member, as unrealistic practice of providing service based on term of disease. Due to these reasons, dementia patients should have characteristic definition of end-of-life, "a continuously aggravating condition/disease that eventually leads to death", which would classify the disease as a type of medical end-of-life condition. By analyzing interview content, researchers believed that a family of dementia patient would desperately need a long-term palliative care program, with focus on: (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.