- 期刊
照護一位粒線體缺陷病人面臨死亡威脅之加護經驗
Intensive Nursing Experience of Caring for a Patient with Mitochondrial Defect Facing Mortality Salience
摘要
本文描述一位54歲男性，因罹患粒線體缺陷屬於遺傳性代謝疾病，造成多重器官衰竭及面臨死亡之護理經驗，個案因母親及哥哥因此疾病陸續死亡，故本身對於疾病預後產生消極及無望，故引發筆者介入。護理期間自2021年7月31日至9月8日，運用Gordon 11項功能性健康型態評估，經由會談、觀察、身體評估及病歷查閱等收集資料，確立個案主要健康問題有心輸出量減少、無效性呼吸型態、無望感等。護理過程為在急性期間密切監測照護維持血液動力學穩定、監測輸入出量減少心臟負荷；待個案生命徵象穩定後教導腹式呼吸、有效深呼吸咳嗽，改善呼吸型態，依照個案的耐受程度調整呼吸訓練；與個案建立信任的護病關係，鼓勵個案表達內心感受，跨團隊共同擬定照護計畫及提供醫療訊息，增加照護信心，降低其無望感。建議重症罕見疾病病人提早提供預定醫療決定，以確保其在意識昏迷、無法清楚表達時，依然能貫徹執行，保障罕見疾病病人之善終權利。
並列摘要
This report describes the nursing experience of caring for a 54-year-old man, inherited metabolic diseases due to mitochondrial defect, with multiple organ failure and facing death. The case's mother and elder brother died of the disease one after the other, so he was negative and hopeless about the prognosis of the disease. This motivated the author to study the case in depth. The nursing period was from July 31, 2021 to September 8, 2021. Data were collected through interviews, clinical observation, physical assessments, medical records, and using Gordon 11 functional health patterns. The following health issues were identified, including decreased cardiac output, ineffective breathing pattern, and hopelessness. During the nursing period, the author closely monitored to maintain hemodynamic stability, monitor the input and output volume, and reduce the cardiac load in the acute period. After the patient's vital signs were stable, the nursing process strengthened the respiratory muscle strength, improved the breathing pattern, and adjusted the breathing training according to the patient's tolerance. It also aimed to build a trusting nurse-patient relationship with patient, and through cross-team draw up care planning, encourage patient to express their inner feelings and provide medical information, increase care confidence, and reduce case sense of hopelessness. It is suggested that patients with severe rare diseases can be provided with advance directive in advance to ensure that they can still be implemented when they are unconscious and cannot clearly express, and to protect the rights of patients to die well. This experience can benefit nursing professionals by fostering a greater understanding of patient self-esteem and the benefits of a positive treatment environment.