臨床工作者對癌末患者照護需求的理解與回應

Clinical Workers' Understanding of and Response to Terminal Cancer Patients in Need

施勝烽(Sheng-feng Shih)

生命末期照護 ； 疼痛整合照護 ； 癌末病患 ； 臨床工作者 ； Clinical workers ； end-of-life care (EOLC) ； integrated pain care (IPC) ； terminal cancer patients

高雄師大學報：教育與社會科學類

45期（2018 / 12 / 01）

35 - 63

繁體中文

在生命末期照護(end-of-life care, EOLC)期間，病患與臨床工作者的關係會變得特別敏感，尤其處於末期症狀的照護，常出現自覺負擔的心理現象。本文藉由臨床工作者實務經驗來探索如何建立和維持臨床工作者與病患之間的信賴關係。從臨床工作者對癌末病患需求的理解與回應深入探討，由深度訪談的質性研究方法進行資料收集，遵守告知同意、不傷害與匿名保密等倫理原則，以立意取樣方式邀請六家醫院的臨床工作者為研究對象，共計37 人。臨床工作者對癌末病患後期疼痛整合照護轉化為接受EOLC 之需求，歸納下三項：從診斷檢查到病患角色的承擔，對臨床工作者實際照護需求高；病患與臨床工作者之間的溝通需求具有多元性；依賴性的病患角色與問題解決的策略整合之支持力量。研究結果如下：一、EOLC 服務前，強化整合性且符合人性化的照顧服務。二、EOLC 服務後，有效運用溝通技巧提供釋疑。三、臨床工作者團隊表現，建立專業分工與臨床品質之默契。本文得到以下四個方向的結論：自我成長的價值、情緒反應的撫慰、生理狀況的調節、醫療團隊的合作。以臨床工作者共同對於病患需求進行理解與回應達共創效應之目的。

When patients are diagnosed as entering the end of life care (EOLC) stage, their relationship with clinical workers becomes ＂especially sensitive,＂ and the workers often report feeling an understanding of and response to their need when they attend the terminally ill. By exploring clinical workers' experience of providing EOLC, this study aims to develop approaches that help to build and maintain trust between the EOLC practitioners and the patients. Clinical workers’ SPB associated with looking after EOLC patients was discussed on the basis of stages of illness and medical care. Next, an in-depth interview was conducted under the ethical principles of informed consent, non-maleficence, anonymity and confidentiality, and purposive sampling was used to enroll 37 clinical workers from 6 hospitals. Based on the participants’ clinical experience, EOLC patients’ needs were summarized in three aspects. First, when a patient is diagnosed with a terminal illness, the role of the clinical worker’s service becomes increasingly important for the patient. Second, the terminally ill patient needs multifaceted support from the clinical worker. Third, strategic cooperation between clinical workers should be duly undertaken to meet the growing needs of dying patients. Three practical implications drawn from the integrated pain care (IPC) findings are: 1. Before EOLC is administered, this caring service should be better tailored to the individual needs of patients; 2. After EOLC is administered, the clinical worker should effectively address any questions raised by the patient and his or her family members, and thus establish and maintain a satisfactory level of the clinical quality of EOLC. The conclusions of this study were as follows: the value of self-growth, the comfort of emotional response, the regulation of physiological status, and the cooperation of medical teams. The assignment of EOLC tasks should be made on the basis of clinical workers’ respective areas of expertise.

1. 林耀盛、邱子芸(2015)。臨終處境的陪伴轉化：癌末病患及其照顧者心理經驗與存在現象探究。中華心理衛生學刊，28(2)，189-219。
   連結：
2. 莊鈺如、陳幼貴、洪敏瑛(2015)。照顧一位小細胞肺癌末期病人之護理經驗。腫瘤護理雜誌，15(2)，95-105。
   連結：
3. 楊惠玲、陳蘊珩、林純如、林小玲、胡麗霞(2016)。護理人員照顧末期病人的情緒困擾與死亡因應自我效能之關聯─以北部某醫學中心為例。安寧療護雜誌，21(1)，16-29。
   連結：
4. Canadian Hospice Palliative Care Association(2015).A model to guide hospice palliative care: Based on national principles and norms of practice.Ottawa, ON:Canadian Hospice Palliative Care Association.
5. Carney, T. F.(1990).Collaborative inquiry methodology.Ontario, Canada:Division for Instructional Development, University of Windsor.
6. Clarke, E. B.,Curtis, J. R.,Luce, J. M.,Levy, M.,Danis, M.,Nelson, J.,Solomon, M. Z.(2003).Quality indicators for end-of-life care in the intensive care unit.Critical Care Medicine,31(9),2255-2262.
7. Clarke, E. B.,Luce, J. M.,Curtis, J. R.,Danis, M.,Levy, M.,Nelson, J.,Solomon, M. Z.(2004).A content analysis of forms, guidelines, and other materials documenting end-of-life care in intensive care units.Critical Care Medicine,19(2),108-117.
8. Copprue, T.(2009).Under the mango tree: A spiritual way of living merry.Charlotte, NC:Baker & Taylor Books.
9. Curtis, J. R.,Ciechanowski, P. S.,Downey, L.,Gold, J.,Nielsen, E. L.,Shannon, S. E.,Treece, P. D.,Young, J. P.,Engelberg, R. A.(2012).Development and evaluation of an interprofessional communication intervention to improve family outcomes in the ICU.Contemporary Clinical Trials,33(6),1245-1254.
10. Curtis, J. R.,Engelberg, R. A.(2006).Measuring success of interventions to improve the quality of end-of-life care in the intensive care unit.Critical Care Medicine,34(11),341-347.
11. Curtis, J. R.,White, D. B.(2008).Practical guidance for evidence-based ICU family conferences.CHEST Topics in Practice Management,134(4),835-843.
12. Danis, M.,Federman, D.,Fins, J. J.,Fox, E.,Kastenbaum, B.,Lanken, P. N.,Long, K.,Lowenstein, E.,Lynn, J.,Rouse, F.,Tulsky, J.(1999).Incorporating palliative care into critical care education: Principles, challenges, and opportunities.Critical Care Med,27(9),2005-2013.
13. Downey, L.,Au, D. H.,Curtis, J. R.,Engelberg, R. A.(2013).Life-sustaining treatment preferences: matches and mismatches between patients' preferences and clinicians' perceptions.Journal of Pain and Symptom Management,46(1),9-19.
14. Fassier, T.,Azoulay, E.(2010).Conflicts and communication gaps in the intensive care unit.Current Opinion in Critical Care,16,654-665.
15. Fassier, T.,Lautrette, A.,Ciroldi, M.,Azoulay, E.(2005).Care at the end of life in critically ill patients: The European perspective.Current Opinion in Critical Care,11,616-623.
16. Ferris, F. D.,Balfour, H. M.,Bowen, K.,Farley, J.,Hardwick, M.,Lamontagne,West, P. J.(2002).A model to guide patient and family care: based on nationally accepted principles and norms of practice.Journal of Pain and Symptom Management,24(2),106-123.
17. Ford, D. W.,Downey, L.,Engelberg, R.,Back, A. L.,Curtis, J. R.(2012).Discussing religion and spirituality is an advanced communication skill: an exploratory structural equation model of physician trainee self-ratings.Journal of Palliative Medicine,15(1),63-70.
18. Frankl, V. E.(1986).The doctor and the soul: From psychotherapy to logotherapy.New York, NY:Vintage Books.
19. Gries, C. J.,Cuitis, J. R.,Wall, R. J.,Engelberg, R. A.(2008).Family member satisfaction with end-of-life decision making in the ICU.CHEST,133(3),704-712.
20. Hodde, N. M.,Engelberg, R. A.,Treece, P. D.,Steinberg, K. P.,Curtis, J. R.(2004).Factors associated with nurse assessment of the quality of dying and death in the intensive care unit.Critical Care Medicine,32(8),1648-1653.
21. Kao, S. C.,van Zandwijk, N.,Corte, P.,Clarke, C.,Clarke, S.,Vardy, J.(2013).Use of cancer therapy at the end of life in patients with malignant pleural mesothelioma.Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer,21(7),1879-1884.
22. Kumar, R.、黃國光譯(2015)。研究方法—入門與實務。臺北市:雙葉。
23. Luce, J. M.(2010).End-of-life decision making in the intensive care unit.Am J Respir Crit Care Med,182(1),6-11.
24. Mount, B.,Kearney, M.(2003).Healing and palliative care: Charting our way forward.Palliative Medicine,17,657-658.
25. Mularski, R. A.(2006).Defining and measuring quality palliative and end-of-life care in the intensive care unit.Critical Care Medicine,34(11),309-316.
26. Mularski, R. A.,Curtis, J. R.,Billings, J. A.,Burt, R.,Byock, I.,Fuhrman, C.,Levy, M. M.(2006).Proposed quality measures for palliative care in the critically ill: A consensus from the Robert Wood Johnson Foundation critical care workgroup.Critical Care Medicine,34(11),404-411.
27. Nelson, J. E.(2006).Identifying and overcoming the barriers to high-quality palliative care in the intensive care unit.Critical Care Medicine,34(11),324-331.
28. Nelson, M. J.,Deiorio, N. M.,Schmidt, T. A.,Zive, D. M.,Griffiths, D.,Newgard, C. D.(2013).Why persons choose to opt out of an exception from informed consent cardiac arrest trial.Resuscitation,84(6),825-830.
29. Osborn, T. R.,Curtis, J. R.,Nielsen, E. L.,Back, A. L.,Shannon, S. E.,Engelberg, R. A.(2012).Identifying elements of ICU care that families report as important but unsatisfactory: decision-making, control, and ICU atmosphere.CHEST,142(5),1185-1192.
30. Rialon, K. L.,Abernethy, A. P.,Mosca, P. J.(2012).Integration of palliative surgery into the palliative care delivery team.Journal of Palliative Medicine,2(2),1000e115.
31. Rubenfeld, G. D.,Curtis, J. R.(2001).End-of-life care in the intensive care unit: A research agenda.Critical Care Medicine,29(10),2001-2006.
32. Suchman, E. A.(1965).Stages of illness and medical care.Journal of Health and Social Behavior,6,114-128.
33. Sun, V.,Grant, M.,Koczywas, M.,Freeman, B.,Zachariah, F.,Fujinami, R.,Ferrell, B.(2015).Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer.Cancer,121(20),3737-3745.
34. Truog, R. D.,Campbell, M. L.,Curtis, J. R.,Haas, C. E.,Luce, J. M.,Rushton, C. H.,Kaufman, D. C.(2008).Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine.Critical Care Medicine,36(3),953-963.
35. 巴金編(1993)。巴金全集。中國大陸:人民文學。
36. 李閏華(2013)。安寧療護社會工作。臺北市:洪葉。
37. 施勝烽(2016)。生命末期照護評估與溝通：整合安寧療護與臨終關懷之實踐。臺中市:華格那。
38. 施勝烽、盧煜焬(2015)。以主路徑分析法探討中高齡者之多維度生命末期照顧概念。福祉科技與服務管理學刊，3(4)，385-400。
39. 郭俊偉(2012)。質性研究論文撰寫：一本適用於學習者與教學者的入門書。臺北市:五南。
40. 陳向明(2015)。社會科學質的研究。臺北市:五南。
41. 鈕文英(2017)。質性研究方法與論文寫作。臺北市:雙葉。
42. 楊克平(2012)。安寧與緩和療護學：概念與實務。臺北市:華杏。
43. 蕭瑞麟(2018)。不用數字的研究：質性研究的思辯脈絡。臺北市:五南。