- 期刊
照顧一位漸凍症末期病人及其家庭之安寧療護經驗
A Hospice Care Experience of an End-stage ALS Patient and Families
摘要
本文敘述一位漸凍症末期病人的護理經驗，護理期間為2015年5月14日到8月17日，經臨床的評估觀察、直接照護及與個案、家屬的互動，運用自製專屬溝通字卡與個案進行溝通及與案家會談等方式蒐集資料，評估病人生理、心理、靈性及社會的全人需求，發現個案有呼吸道清除功能失效、身體活動功能障礙及預期性哀傷等護理問題。護理過程先與個案及案家維持治療性信賴的護病關係，並與個案及案家一同擬定照護計畫，並視個案耐受狀況逐漸延長復健護理時間，降低其痰液多、肢體痠麻情形；給予個別性護理指導並陪伴案家反覆練習照護技巧；運用生命回顧、語言及非語言溝通方式減輕預期性哀傷之影響，使個案及案家能正向面對往後生活。結合醫療團隊與個案及案家共同擬定診療計畫，討論返家時機，經多次至案家評估環境、模擬運送過程及克服租借呼吸機及相關醫療設備等困難，終能順利達成個案於居家照護的心願。長期治療的個案往往因罹病時間長而消磨鬥志，他人過多的關心往往也造成案家的困擾，這是筆者照護時最感困難之處。陪伴及尊重個案的決定是最重要的原則。照護過程中個案讓筆者深深體會到生命的價值，故希望能與護理同仁分享此照護經驗。
並列摘要
This article describes the hospice nursing care experience of an end-stage Amyotrophic Lateral Sclerosis patient. The care period was from May 14 to August 17, 2015. Data were collected via physical evaluation, observation, direct care, interaction with the patient and families, a home-made exclusive communication card for the patient, and talking to the families. Data were evaluated in terms of the physical, psychological, social, and spiritual aspects needs of the whole person. The major health problems we found were ineffective airway clearance, functional disability in physical activity, and anticipatory grief. Through the therapeutic trusting relationship we developed a nursing plan together with the patient and families. Depending on the patient’s tolerance, rehabilitation time was gradually extended. Individual nursing guidance was provided to help the accompany family members to repeatedly practice care skills. Using life review, verbal and non-verbal communication was used to reduce anticipatory grief, to help the patient face the future positively. We collaborated with the medical team, and discussed with family members to develop a care plan together, talked about the timing of returning home, assessed the home environment several times, simulated the delivery process, and overcame difficulties in renting ventilators and related medical equipment. Finally, the patient’s wish for home care was fulfilled. Patients often lose morale when facing a long illness, but too much concern can cause family distress, which is a most difficult situation when caring for such patients. The most important principle is to accompany and respect the patient’s decision. In the process of caring, we deeply understand the value of life. We hope our experience might provide guidelines for similar care in the future.