父母與臨終子女身體接觸的經驗

Abstract

台灣地區每年有兩千多對父母面臨喪子之痛。喪子對父母來說，是一種自我的失落、希望的破滅。惡性腫瘤為兒童第二死因，從病童診斷開始，病童與父母皆依賴醫院給予治療與照護，甚至到生命最後的臨終階段，許多父母選擇在醫院送走子女；因此，護理人員如何協助整個家庭在病童臨終時刻達到「善終」，將是影響父母後續悲傷反應的重要關鍵時刻。 本研究以質性研究的方式，回溯性地暸解父母與其臨終子女身體接觸的經驗為何？促進與阻礙臨終親子身體接觸經驗的情境為何？以及此身體接觸經驗對父母之悲傷反應有何影響？研究對象採立意取樣，收案條件為：（1）有18歲以下子女因惡性腫瘤而死亡，死亡日期在2008年1月1日~2009年12月31日之間，且該子女臨終階段就醫於台北某醫學中心；（2）子女死亡前24小時之內曾陪伴在該子女身邊者；（3）主要能以國語或台語溝通者。資料收集方法包括開放性會談、參與式觀察法及病歷回顧。 本研究共15位癌歿病童的母親參與，80％母親與臨終子女有身體接觸的經驗，病童意識清楚時的親子身體接觸大多為安撫病童為主的擁抱與撫摸，若病童意識不清則以被動性關節運動、塗抹乳液與簡單的按摩為主；病童臨終時若在加護病房接受治療，則病童身上的多種侵入性管路與醫療設備會使母親認為不與子女身體接觸也是一種保護子女的行為，但不能與子女有身體接觸讓母親覺得相當不捨與遺憾。遺體護理方面，53％母親可參與擦拭身體與穿著衣服配件等項目，13％父親可在旁協助，但較不親手觸碰子女的身體；母親參與遺體護理的心情是要盡力安撫子女，使他們免除死亡恐懼，而母親對於護理人員在旁邊帶著自己執行遺體護理，覺得感謝與感動。若母親在子女死亡前已有心理準備以及病童臨終時採行支持性治療，則母親較可能參與遺體護理；環境方面若子女死亡於一般病房，或子女死亡時身上侵入性管路較少，則母親參與遺體護理的機會比較大；而若死亡子女的性別為女性、死亡時年齡越大及子女生病期間越長，則母親較願意參與遺體護理。至於母親沒有參與遺體護理的原因有：認同死亡過程不能觸碰死者或不能白髮人送黑髮人的信念（約佔20％）、來不及（13％）與當時情緒太震驚（13％）。 因此，醫護人員可經以下四點方向來減少父母在子女臨終期間無法與子女有身體接觸經驗的不捨與遺憾：（1）適時與父母討論臨終治療目標與方式。（2）適時協助父母作好子女死亡的心理準備與後事準備。（3）減少末期病童在加護病房死亡的比率。（4）減少加護病房設備與治療所需的侵入性管路成為阻礙臨終親子身體接觸的原因。

Background In Taiwan, there are approximately 3,000 parents who experience the grief of their children’s death annually. The second leading cause of death in children is cancer. When time to say goodbye, many parents decide to send their children to the hospital. Therefore, it is important to help the terminally ill children to get good death. Purpose (1) To understand the experience of parent-child physical contact in the terminal phase. (2) To explore the situations that promote or inhibit the parent-child physical contact in the terminal phase. (3) To realize how the experience of parent-child physical contact in the terminal phase affected the grief of parents. Methods This study was qualitative approach and cross-sectional design. The subjects were 15 mothers of cancer children who had died. Data were collected by open-ended interview, participant observation and chart review. Results 80% of the mothers said that they had the experience of parent-child physical contact in the terminal phase. If children’s consciousness were clear, they hugged and touched. Otherwise, if children’s consciousness was unclear, the forms of physical contact were consisted of passive range of motion(PROM) and simple massage with or without lotion. By the way, if the cancer children were treated in intensive care unit, their mothers tended to avoid touching their children in order to protect their children. But they felt regret after their children died. When it came to body care, 53% of the mothers participated in it. They thought that they had to protect their dying children from the fear of death by talking to them. There were some situations that made them have more probability to join in body care: (1) To have preparation for the death of their children. (2) The dying children were treated in general ward by supportive care. (3) There were less intrusive lines on children’s body. (4) The dying children were female. (5) The dying children were older. (6) The longer period of illness. Moreover, there were some reasons for mothers who didn’t participated in body care: (1) They thought it was not appropriate for parent to touch their dying children. (2) They went back to the hospital too late. (3) They were too shock for hearing that their children were dying. Conclusions To reduce the regret of patents who were unable to perform physical contact with their dying children, there are four directions for medical care team to do: (1) To discuss with parents about terminal care goals and treatments earlier. (2) To well prepare parents to the anticipated death of their children. (3) To reduce the ratio of the terminally ill children died in the intensive care unit. (4) To encourage parent-child physical contact whether there were many equipments and intrusive lines on children’s body.