- 期刊
跨專業醫療團隊走入社區安寧服務－協助罕見疾病個案善終之經驗
The Trans-disciplinary Team on The Move to The Community Hospice: A Case Study of Home Care Patient with Rare Diseases to Obtain Good Death
摘要
目的：本文旨在探討以跨專業團隊提供罕見疾病－家族性澱粉樣多發性神經病變個案，因失能且不便外出就醫之居家照護服務。方法：運用個案報告分享以病歷資料、會談、觀察及實際參與照護方式收集資料，以個案為中心之整合照護服務經驗。結果：此個案初期僅由門診醫療及長照2.0居家護理服務介入，爾後轉介衛生福利部國民健康署「罕見疾病照護服務計畫」之居家照護，從單一居家護理發展到罕病團隊全程的照護，以醫院為基礎跨專業團隊提供罕病照護服務計畫，並導入社區安寧服務模式之決策期、穩定期、瀕死期、悲傷輔導期等不同階段服務，最後個案完成在宅善終之心願。結論：罕病患者屬於弱勢族群，一旦罹病將要面對身體漸進式失去功能，以及家族遺傳性陰影，最終邁向死亡。罕病照護計畫透過個案管理模式建立，以全人觀點進行整體性需求評估、運用夥伴關係為基石發展以醫院為基礎之整合服務，跨專業團隊及早介入，始能提升罕病患者生活品質及最後善終目標。
並列摘要
Objectives: This study aims to investigate the home care service provided by a trans-disciplinary team to a patient with Familial Amyloidotic Polyneuropathy, who has difficulty in mobility due to his disability. Methods: The experience of a combined care integration from multi-disciplinary professionals is shared in terms of a case study. Results: This patient was originally provided with outpatient service and home care nursing intervention by Long-Term Care 2.0. Then he received home care service from ＂Rare Diseases Caring Project＂ by the Health Promotion Administration of Taiwan. From single nursing care to a medical team service, a hospital-based trans-disciplinary caring program was implemented for patients with rare disorders. In addition, a community-based hospice model, including decision-making phase, stable phase, pre-dying phase and bereavement phase, was operated to fulfill this patient's will to have a good death at home. Conclusions: Patients with rare diseases are one of the underprivileged groups. They suffer from progressive dysfunction and fear of inheritance, and move toward death. It is expected that a caring plan for patients with rare diseases is based on case management. A more flexible and creative service model can be developed to evaluate patients' needs from a holistic perspective and provide a hospital-centered service based on partnership. Early intervention of a medical trans-disciplinary team is also beneficial to enhance their life quality, and reach a good death.
參考文獻
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