兒童加護病房死亡病童與不施行心肺復甦術醫療照護 之探討

Abstract

研究背景：臺灣在2000年6月7日由總統公布並施行「安寧緩和醫療條例」，推動預立醫療決定、保障末期病患有選擇不施行心肺復甦術（Do not resuscitate, DNR）的權利，進一步強調醫療自主權、重視末期病患的生活品質。法律規範20歲以下為限制行為能力或無行為能力者，需由法定代理人代理生命末期醫療決策。然而，兒童先天性疾病繁多複雜，病程走向難以預料，加上親情難捨，臨床上經常遇到生命末期病童其簽署人簽署不施行心肺復甦術意願書所引發的問題。由於國內缺乏相關文獻，引發研究者欲探討過去死亡病童執行不施行心肺復甦術及撤除無效的維生醫療的情形。 研究目的：本研究目的有四：(1)探討在兒童加護病房簽署不施行心肺復甦術意願書的比率及趨勢變化、(2)探討簽署人簽署不施行心肺復甦術意願書的時間與病童的死亡時間間距、(3)分析影響簽署人簽署不施行心肺復甦術意願書的因素、(4)探討簽署不施行心肺復甦術意願書後執行撤除無效的維生醫療的比例。 研究方法與工具：本研究採回溯性世代研究，以病歷回顧方法，於北部某醫學中心病歷室進行。研究對象為於2005年1月1日至2014年12月31日期間在兒童加護病房接受照護、且年齡介於0~20歲之死亡病童。研究工具是由研究者經文獻查證自擬的「兒童加護病房死亡病童與不施行心肺復甦術醫療照護研究之資料收集表」，收集的資料採編碼方式處理確保維護病人隱私。資料分析採用SPSS 22.0統計軟體進行，以描述性及推論性統計分析。查閱後計有313份符合收案條件病歷，其中有7份因病歷無法取得而予剔除，總計有306份進入分析。 研究結果：研究結果發現，2005~2014年兒童加護病房不施行心肺復甦術意願書的簽署比率為85.9%（263/306），但簽署率在研究期間未有明顯變化。簽署不施行心肺復甦術意願書的時間與死亡時間間距平均為3.83±6.96天，在死亡前24小時內簽署者有140位（53.2%, 140/263）。僅有24%（63/263）的死亡病童在其簽署人簽署不施行心肺復甦術意願書後，執行撤除無效的維生醫療，撤除時間與死亡時間間距平均為10.74±22.90小時。使用羅吉斯迴歸（Logistic regression）分析，發現影響其簽署人簽署不施行心肺復甦術意願書的因素為死亡病童入住加護病房天數及住院總天數，入住加護病房>9天及住院總天數>30天者較容易簽署（p<0.05）。另外不施行心肺復甦術意願書的簽署則與病童的性別、年齡、疾病種類、家庭宗教信仰及病童父母親的教育程度無關（p>0.05）。 研究結論與臨床運用：本研究結果讓臨床醫療人員瞭解在兒童加護病房中，簽署不施行心肺復甦術意願書及撤除維生醫療的現況。臺灣「安寧緩和醫療條例」於西元2000年實施後，大多數的死亡病童（85.9%）有簽署不施行心肺復甦術意願書，不過其簽署人簽署的時間大多過於接近病童死亡的時間，且常有重新簽署的狀況，其原因和醫療團隊與家屬間的病情解釋、討論治療方向是否有關，有需要更進一步的研究討論。期望未來生命末期病童的家屬能在以不違背醫療倫理為前提下，發揮尊重自主、不傷害及公平正義原則，儘早簽署不施行心肺復甦術意願書或執行撤除無效的維生醫療，讓末期病童善終，同時也能更有效的分配醫療資源。

Background: Hospice Palliative Care Regulation has been administrated since in 2000/06/07 in Taiwan. The regulation is designed to promote terminal patient’s quality of life. It does not only ensure that terminal patients have the right to sign do not resuscitate (DNR) consent, but also emphasize on having medical autonomy. According to the regulation, the people under than the age 20 and with incapacity cannot consent by themselves. Instead they need their guardians or welfare attorney will have the power to give the consent. Some patients with complexity of congenital diseases are difficult in predicting the outcome of treatment. It is extremely hard for parents to make decision regarding treatment, especially when the relationship between parents and children is usually very close. Therefore, issues in decision of pediatric end-of-life care are commonly highlighted in clinical environment. Nevertheless, only a few studies related to pediatric end-of-life care in Taiwan, so the author aim to eager to research that in this study. Purpose: Four research purposes are shown in following: (1) analyzing the trend of signing DNR consent with the death in pediatric intensive care unit (PICU). (2) analyzing the time difference between signing DNR consent and the actual time of death. (3) analyzing the ratio of withdrawing life-sustaining treatment to not withdrawing after signing DNR consent. And (4) analyzing the factors that influence patient’s guardian to sign DNR consent. Methods and Measurement: Retrospective cohort method is used to review the medical records of PICU death patients under the age of 20 who died between January 1, 2005 and December 31, 2014, at a medical center hospital. The research tools include a questionnaire about end-of life care, which is designed by the researcher. The data is coded with number to protect the patient’s privacy. SPSS 22.0 software is used to perform descriptive analysis and inferential statistics. A total of 313 patients met the inclusion criteria. 7 patients are excluded, due to the lost of their medical records. Finally, 306 medical records are analyzed. Results: Between 2005~2014, 85.9% (n=306) patients died with a DNR order. No obvious trend was found in the 10 years. The average time between patients having DNR consent and time to death was 3.83±6.96 days, but of these, 53.2% patients died within 24 hours after singing DNR consent. Only 24% patients who had signed DNR consent (n=263) died following the withdrawing of life support. The average time between withdrawing life sustaining treatment and time of death was 10.74± 22.90 hours. Logistic regression was used for analyzing the relationships between a PICU stay, decisions to sign DNR consent, and hospital stay, and patients’ characteristics. The result showed that those who stayed in PICU more than 9 days or those who stayed in hospital more than 30 days were significantly likely to obtain a DNR order than those who died with a shorter PICU stays or hospital stays (p<0.05). There were no significant association between patients’ gender, age, diagnosis, religious and the education level of patient’s parents (p>0.05). Conclusion and Implication: This study helps us with a better understanding of the reality in pediatric end-of-life patients, especially the percentage of patients with DNR consent and withdrawing of life sustaining treatment in PICU. Hospice Palliative Care Regulation has been performed since 2000, then 85.9% pediatric terminal patient’s guardian singed a DNR consent. Nevertheless, the time between singing and the time of death was too close. Moreover, the DNR consent sometimes singed repeatedly. Repeating singing DNR consent is found to be associated with communication between clinicians and family members. A further research is suggested to be performed. Singing DNR consent or withdrawing of life-sustaining treatment should be based on the principle of respect for autonomy, non-maleficence, beneficence and justice. Early singing DNR consent or withdrawal of life-sustaining treatment not only give patients a better end-of-life quality, but also reduce futile medical care which can let medical resources be distributed more equally.