以個案研究法分析某醫學中心兒童病房癌症末期照護困境

Difficulties in End-of-Life Care for Cancer Children in a Pediatric Ward: A Case Study

陳思蓉(Su-Jung Chen) ； 徐獻洲(Hsian-Chou Hsu) ； 黃美智(Mei-Chih Huang)

《腫瘤護理雜誌》 19卷增訂刊 (2019/03) Pp. 27-38

https://doi.org/10.6880/TJON.201903/SP_19.03

摘要

背景：癌症是兒童非意外致死之首要原因，然臨床上對兒癌末期之全方位照護品質則尚待提升。目的：探討南部某醫學中心兒童癌症末期照護困境。方法：採個案研究法，收集該醫學中心兒科病房之網站、檔案夾及資料庫相關資料，並以三名於2009－2011年經歷兒科病房、安寧共同照護及安寧病房末期照護之癌症病童作為引導案例，深度訪談兒科病房七位醫護人員，歸納出兒癌末期照護之困境。結果：（一）醫護人員知識、態度與共識困境：1.缺乏兒癌末期照護教育訓練與經驗；2.告知病情時避免強調疾病末期；3.團隊缺乏溝通，未能形成共識。（二）臨床照護困境：1.身體照護：難以解除病童苦痛；2.心理照護：（1）對父母情緒處理與取得共識感到棘手；（2）不主動與病童討論病情，擔心病童提問難以應對。結論：兒科照護團隊在症狀照護、病情告知及末期情緒支持等均面臨知識技能不足且缺乏共識之困境，建議善用安寧共同照護體系，建立個案討論制度，以逐步提升照護品質及建立團隊共識。

關鍵字

兒童癌症 ； 末期照護 ； 個案研究法

並列摘要

Background: Cancer is the leading cause of non-accidental death in children, for whom the quality of end-of-life care still demands great improvement. Purpose: To explore the difficulties in end-of-life care for cancer children. Method: Using case study method, the researchers chose three cancer children who had experienced the combined care among pediatric ward, hospice ward, and palliative shared-care in 2009-2011 to initiate interviews. Seven pediatric staffs were interviewed. Data were analyzed via the induction method. Results: 1. Challenges in the healthcare provider's knowledge, attitude, and consensus: (1) Lack of relevant education and training for the care of terminal cancer children, (2) Reluctance to mention end-stage disease to parents, (3) Absence of consensus and communication among pediatric care team members; 2. The difficulties in providing end of life care: (1) Physical care: inability to relieve the children of the suffering, (2) Psychological care: a. Difficulty in handling parents' emotional response and inability to help them reach a consensus, b. Avoidance of conversation about the disease and fear of questions from the children. Conclusion: The healthcare providers are not competent in symptoms control or truth telling in end-of-life care. We recommend development of their competency in end-of-life care and improvement in the communications and consensus strategy among team members. Palliative shared care and routine interdisciplinary conference may add to their competence and consensus.

並列關鍵字

childhood cancer ； end-of-life care ； case study method

參考文獻

Zimmermann, K., Bergstraesser, E., Engberg, S., Ra-melet, A. S., Marfurt-Russenberger, K., Von der Weid, N., ... Cignacco, E. (2016). When par-ents face the death of their child: A nationwide cross-sectional survey of parental perspectives on their child’s end-of life care. BioMed Cen-tral Palliative Care, 15(30), 1-14. doi:10.1186/s12904-016-0098-3

Meyer, E. C., Ritholz, M. D., Burns, J. P., & Truog, R. D. (2006). Improving the quality of end-of-fife care in the pediatric intensive care unit: Par-ents’ priorities and recommendations. Pediat-rics, 117(3), 649-657. doi:10.1542/peds.2005-0144

Montgomery, K. E., Sawin, K. J., & Hendricks-Fer-guson, V. (2017). Communication during pallia-tive care and end of life: Perceptions of experi-enced pediatric oncology nurses. Cancer Nurs-ing, 40(2), 47-57. doi:10.1097/NCC.0000000000000363

Pritchard, M., Burghen, E., Srivastava, D. K., Oku-ma, J., Anderson, L., Powell, B., ... Hinds, P. S. (2008). Cancer-related symptoms most concerning to parents during the last week and last day of their child’s life. Pediatrics, 121(5), e1301-1309. doi:10.1542/peds.2007-2681

台灣安寧緩和醫學學會（2007）．安寧緩和醫療：理論與實務．台北：新文京開發。[Taiwan Academy of Hospice Palliative Medicine, (2007). Hospice palliative care-theory and practice. Taipei City, Taiwan, ROC: New Wun Ching Developmental Publishing]