一位Peutz-Jeghers 症候群癌變患者之安寧共同照護經驗

The Nursing Care Experience of a Cancerous Peutz-Jeghers Syndrome Patient in Palliative Shared Care

本文描述一位罕見遺傳疾病「Peutz-Jeghers症候群」小腸癌變末期患者，經安寧共同照護介入後，個案由抗拒到接受，進入身、心、靈平安的全人照護經驗。筆者藉由參與照護，運用觀察、溝通技巧及整體性評估，分析個案的議題為：（1）生理層面：腸阻塞、感染與咳嗽；（2）社會心理層面：自我價值低落與志業未竟之遺憾；（3）靈性層面：為誰而活的掙扎等。護理期間，筆者以「安寧共同照護護理師」，與醫療團隊共擬照護計畫，協助症狀控制、提供舒適護理，並舉辦「感恩祝福會」使個案重獲自我肯定，讓個案及其家人能平靜地接受臨終階段，支持案家走過悲傷歷程，落實安寧療護的四全理念。期待本文經驗能提供醫護團隊臨床照護之參考。The purpose of this article was to examine a holistic nursing experience of a patient with rare disease, Peutz-Jeghers Syndrome, which was cancerous and progressed rapidly into a terminal stage. After transferring to palliative shared care, the patient and his family got holistic, humanistic, and dignified care which was returned with a positive feedback. Each aspect of problems was identified through the methods of direct participant care, observation, chart-reviewing, empathetic communication and holistic assessment.The problems included: (1) physical aspect: ileus, infection and cough; (2) psychosocial aspect: low self-esteem; and (3) spiritual aspect: the meanings of living and meaning of fighting for. The nursing goals were set up based on communicating care plan with the medical team. Acting as a pivotal role in bridging different teams, the author negotiated teams to provide active symptom control, comfort nursing intervention, and to deliver 'Thankful & Blessing Party' for patient's self-satisfaction. By accompanying the patient and his family continuously in open-mind circumstances, the patient passed away in peace and it was accepted by his loved family. The hospice team also helped the family practice the four speaking of life: Thankful, Apology, Farewell, and Love. The concept of palliative shared care broke up the limitation of space, and brought hospice service to where patient and family were. It is expected the experience of holistic care could induce more discussion and provide the medical teams reference for further clinic care.