부산대학교 도서관

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.