探討使用居家安寧療護的障礙因素及促成因素-以彰化縣為例

Abstract

研究背景：安寧療護是整合人性與科技的醫療，世界衛生組織（WHO）已將其視為公共衛生問題，整合到現有的醫療保健體系中。生命末期的病患應回歸社區照護，減少在院死亡，接受居家安寧療護，舒適尊嚴的走最後一哩路。台灣安寧療護推動30多年，依據健保署統計2021年死亡前接受居家安寧療護比率，在全國為9.6%，而彰化縣僅有7.6%；在彰化社區居家安寧療護申請案件中，9成個案申請到死亡天數小於2週，相較英國從轉介緩和療護至死亡中位時間為41天，這些實證資料顯示彰化縣需要提高安寧療護比率，且需要有充足的時間申請。 目的：本研究目的透過質性訪談主題分析法，探討民眾使用與不使用居家安寧療護的原因，以了解使用居家安寧的障礙因素及促成因素。 方法：主要採用質性研究，透過使用半結構式問卷、深度訪談符合居家安寧療護條件之個案或家屬，完成資料收集，再運用主題分析法，將關鍵字概念化，逐步歸類，選擇能彰顯研究主題的主軸概念。在資料分析方面，依據居家安寧療護使用情形，分為三組，不用組、使用組及晚用組，分別計算關鍵字出現比率，比較三組別在使用居家安寧療護的障礙因素及促成因素之差異。 結果：共訪談10位生命末期個案之家屬，訪談內容常出現的關鍵字共174個、411頻次，將其分類並概念化，得到25個概念，依據研究問題選出24個概念，再歸納彙整成9個次主題及4個主題，最後歸類為「障礙因素」與「促成因素」兩大類別。使用居家安寧療護的兩大障礙因素為「認知差異」及「照顧負荷」，認知差異為對居家安寧療護的看法，在個案、家庭、文化與資訊等因素產生差異；照顧負荷主要是家庭照顧者的負荷，不敢面對親人死亡及照顧疲憊產生的身心負荷，也有被照顧者擔憂增加家人負荷。使用居家安寧療護的兩大促成因素為「照護需求」及「心理平安」，照顧需求意指末期病人受病痛折磨，為求減輕痛苦、希望得到生活照顧及專業服務之照護需求；心理平安為有接受死亡的心理準備，對安寧有正面印象，病患有表達在宅善終的想法。進一步將訪談對象分為「不用」、「使用」及「晚用」居家安寧療護三個組別分析，發現1.使用組相較不用組有較高比率接受死亡 (13.9% vs 0%)、對安寧比較有正面印象(3.9% vs 0%) 及病患有表達想回家或在家往生的想法(15.7% vs 1.9%)、不避談死亡及不隱瞞病情、有較高的照顧心理負擔(14.8% vs 3.7%)。2.不用組相較使用組有較高比率的認知差異(48.2% vs 8.1%)。3.三組(不用、使用及晚用組) 的受訪者表示有病痛折磨這個概念的比率都比其概念高(21.3% vs 22.4% vs 23.7%)。 結論：根據本研究的實證結果建議推動居家安寧療護，首先必須克服認知差異，增進醫病溝通，即早啟動生命議題的討論，並以「舒適醫療」用語替代「安寧療護」，提高病患的接受度。同時必須減輕照顧者心理負擔，建立末期個案返家之「舒適醫療宅配服務」配套與流程，意指病患出院時銜接居家安寧療護，並提供居家照護指導及諮詢專線。另須滿足舒適照護需求，以病患舒適為優先照護目標，減輕病患痛苦的症狀，並結合長照服務，提供生活照顧及專業服務。幫助病患及家屬增進心理平安，以「想不想回家，醫師及護理師到家服務」來啟動安寧的對話，協助返家善終、儘早做死亡準備。這樣做能克服居家安寧療護推動障礙，並增進促成因素。

Research Background:Hospice care is a medical treatment that integrates humanity and technology. The World Health Organization （WHO） has recognized it as a public health issue and integrated it into the existing health care system. Terminally illness patients should return to community care, reduce in-hospital deaths, receive hospice home care, and have peaceful and dignified end-of-life. Hospice care in Taiwan has been promoted for more than 30 years. However, according to the statistics of the National Health Insurance Administration in 2021, the rate of receiving hospice care at home before death in Taiwan is 9.6%, while only 7.6% in Changhua County. In addition, 90% of applicants in Changhua County were less than two weeks before death, shorter than the median days of 41 days from hospice care to death in the United Kingdom. Such us an evidence-based information suggests Changhua County needs to increase the hospice care rate and needs to have enough time to apply. Research Objective:Using the qualitative interview thematic analysis method, to Explore the reasons for adopted and not adopted hospice home care and to understand the impedimental and contributory factors of hospice home care. Method:This qualitative research was conducted with semi-structured in-depth interviews with patients or family members who qualify for home palliative care. Thematic analysis was adopted to conceptualize the keywords of interview transcripts, categorize the concepts, and select the main concept which can highlight the research theme. In addition, the participants were allocated to the three groups according to the different conditions of hospice home care: not adopted vs. adopted vs. late adopted. Finally, the researcher calculated the appearance rate of concepts' keywords, comparing the impedimental and contributory factors between the three groups. Result:A total of 10 family members of Terminally illness patients were interviewed. There were 174 keywords and 411 frequencies frequently appearing in the interview content. They were categorized and conceptualized to obtain 25 concepts. According to the research questions, 24 concepts were selected and summarized into nine sub-themes and four themes, and finally grouped into 'impedimental factors' and ' contributory factors.' The two significant impedimental factors to hospice home care are 'cognitive differences' and ' care burden.' Cognitive differences are perceptions of hospice home care, which vary among individuals, families, cultures, and information differences. The care burden is mainly from family caregivers, who are afraid to face the death of their relatives and their exhaustion from taking care of patients. Some patients are worried about increasing the load on their families. The two major contributory factors to the adopted of hospice home care are 'care needs' and 'psychological safety.' Care needs refer to terminally illness patients suffering from illness and need to relieve their pain and hope to receive life care and professional services. Psychological safety is the psychological preparation to accept death and having a positive impression of hospice care and patient expresses thoughts of wanting to go home or die at home. Comparing three groups, 'not adopted,' ' adopted,' and 'late adopted,' this research demonstrated that 1. Compared with the not adopted groups, the adopted group had a higher rate of accepting death (13.9% vs 0%), having a positive impression of hospice care (3.9% vs 0%), patient expresses thoughts of wanting to go home or die at home (15.7% vs 1.9%), do not avoid talking about death and tell the truth, had a higher rate of care burden (14.8% vs 3.7%). 2.Compared with the adopted group, the not adopted group has higher rate of cognitive differences (48.2% vs 8.1%). 3. All three groups have higher rates of pain and illness suffering (21.3% vs 22.4% vs 23.7%). Conclusion:The current findings, the result suggest that promoting hospice home care must first overcome cognitive differences, improve clinician-patient communication, initiate discussions on life issues as early as possible and replace 'hospice care' with the term 'comfortable medical care' to improve patient acceptance. Meanwhile, reducing caregiver psychological burden and establishing a 'comfortable medical home delivery'. Linking hospice home care with the discharge of hospitalization provides. provide home care guidance and consultation hotlines. In addition, the care team must meet the care needs, prioritize patient comfort, and alleviate the patient's distressing symptoms, and provide professional and daily life care in combination with long-term care services. Help patients and their families to improve their psychological safety, 'Would you like to go home? Doctors and nurses will serve at home” to start a hospice dialogue, assist in returning home for good death and prepare for death early. So doing will promote hospice home care to overcome the impedimental and enhance the contributory factors.