末期脊髓小腦萎縮症安寧療護：個案報告

The Experience of Hospice/Palliative Care for The Terminal Patient of Spinocerebellar Ataxia Type 3

林呈璟(Cheng-Ching Lin) ； 王尹星(Yin-Hsin Wang) ； 蔡珮琦(Pei-Chi Tsai) ； 黃志中(Joh-Jong Huang) ； 黃洽鑽(Chia-Tsuan Huang) ； 吳建誼(Chien-Yi Wu)

《安寧療護雜誌》 21卷1期 (2016/03) Pp. 101-110

https://doi.org/10.6537/TJHPC.2016.21(1).8

摘要

脊髓小腦萎縮症是一種顯性遺傳性神經系統疾病，目前醫學發展仍無法使用藥物或其他方式，來延緩及遏止疾病的進展，因此照顧病人的唯一方式即是症狀支持療法，而因為疾病緩慢進展造成病人及家屬極大的身心壓力，這群病人及家屬也成為憂鬱症的高危險族群，因此，脊髓小腦萎縮症的病人需要醫療團隊提供身心靈全面的照顧。本文即探討安寧團隊照顧一位末期脊髓小腦萎縮症病人之經驗。

關鍵字

脊髓小腦萎縮 ； 安寧療護 ； 末期疾病

並列摘要

The technology of medicine is highly developed. While we could keep patients alive, we might prolong patient’s suffering as well. The results depend on how we use it. Recently Hospice/palliative care has been widely advocated. Medical workers are rethinking this problem. Since September 2009, hospice/palliative care was extended to those patients in ＂the eight categories of non-cancer end-stage diseases＂ by the National Health Insurance Bureau. However, some rare terminal illnesses, such as Spinocerebellar Ataxia, are still not definitely eligible for hospice/palliative care under this policy. Spinocerebellar Ataxia is a kind of dominant hereditary neurological diseases. Today we are still unable to use medicines or other treatments to prevent the progression of this disease. Hospice/palliative care is the way to care these patients. Moreover, the patients and their families suffer from depression disorder caused by this disease with high pressure. In conclusion, these patients need a medical team to offer not only physical but also psychological, socioeconomic, and spiritual supportive care. This case report presented an experience of a palliative care team who cared a patient at the terminal stage of Spinocerebellar Ataxia and the associated clinical problems.

並列關鍵字

Spinocerebellar Ataxia ； hospice care ； terminal disease

參考文獻

National Institute of Neurological Disorders and Stroke. Spinocerebellar ataxia type 3. Available at: http://www.ninds.nih.gov/disorders/machado_joseph/detail_machado_joseph.htm#3163_5. Accessed January 24, 2016.

Sudarsky L, Corwin L, Dawson DM. Machado-Joseph disease in New England: clinical description and distinction from the olivopontocerebellar atrophies. Mov Disord 1992; 7: 204-208.

Department of Health. Standard treatment protocol for Machadi-Joseph disease/spinocerebellar ataxia type 3. Available at: http://remotehealthatlas.nt.gov.au/standard_treatment_protocol_mjd.pdf. Accessed January 24, 2016.

Leung MC Jack, Lo R. Challenges in Palliative Care of Neurodegenerative Patients. HKSPM Newsletter 2008; 2; 28-29

Tomik B, Guiloff RJ. Dysarthria in amyotrophic lateral sclerosis: A review. Amyotroph Lateral Scler. 2010; 11: 4-15