住院病患家屬對病人自主權利法的認知、態度及預立醫療決定的行為意向

Knowledge and attitudes regarding the Patient Autonomy Act and behavioral intention regarding signing advance decision among in-patients' family members

目標：探討住院病患家屬對「病人自主權利法」（簡稱病主法）的認知、態度和預立醫療決定的行為意向。方法：以自擬結構式問卷為調查工具，於台北某國立醫學中心內外科病房及加護病房之住院病患家屬為訪問對象，共收案80人。結果：1)不到一半的受訪者（48.8％）知道己實施「病主法」，然而對病主法內容的答對率卻很高（71.88％），顯示多數受訪者肯定病人自決的理念。女性較男性有較高的填對率（35.00％vs.13.75％,p<0.001）。多數受訪者對「病主法」與安樂死（協助加工死亡）的差異並不清楚。2)90％以上受訪者願意進行「預立醫療照護諮商」（ACP），但卻只有一半（51.25％）願意簽署「預立醫療決定」（AD）。受訪者自覺生活品質良好會傾向簽定預立醫療決定。3)受訪者面對疾病末期時，治療選擇的考量因素首要為「治療後會不會造成未來家庭經濟負擔」，其次才是「治療後是否依舊行動自主」，第三是「治療後能不能恢復清醒」。4)受訪者對自己或是對父母、配偶在疾病末期情境下（以「重度失智症」為例）所做的治療選擇明顯不同。5)值得注意的是，多數受訪者不認為簽署「病主法」後，醫療人員即不再提供治療照護，也不認為簽署「病主法」就是等死。結論：住院病患家屬雖不完全知道「病主法」，但大多認同「病主法」能尊重「個人治療意願」，顯示多數民眾肯定個人自決的理念。民眾面對自己在疾病末期或是替父母、配偶在疾病末期做決定時，傾向採取不同的決策選擇，政府應強化宣導「預立醫療決定」，以避免疾病末期的決策困境。（台灣衛誌2020|39(3)：342—349）
Objectives: To investigate the understanding of and attitude toward the ''Patient Right to Autonomy Act'' (hereafter, Patient Autonomy Act) among family members of hospitalized patients and their behavioral intention in advance decision (AD). Methods: A structured and specifically tailored questionnaire was used to conduct interviews with 80 family members of patients in the intensive care unit, medical, and surgical wards of a national university hospital in Taipei. Results: (1) Only 49.8% of the interviewees were aware of the Patient Autonomy Act| however, the understanding of its content was very high, with a correct rate of 71.88%. The results indicated that most interviewees were in favor of the concept of patient autonomy. However, most interviewees were also unclear regarding the difference between the Patient Autonomy Act and euthanasia (assisted death). Women had a better grasp of this distinction than did men (correct rate = 35.00% vs. 13.75%). Married individuals demonstrated a better understanding of the Patient Autonomy Act than unmarried individuals did. (2) More than 90% of the interviewees were willing to engage in advance care planning| however, only 51.25% of the interviewees were willing to sign an AD. Interviewees who judged that they had a good quality of health were more inclined to sign an AD. (3) In case of terminal illness, interviewees' medical decisions were primarily concerned with whether the patient recovers consciousness after treatment, whether they were still able to move autonomously, and whether treatment would incur a financial burden. However, interviewees' medical decisions varied depending on whether the decision was to be taken in connection with themselves, their parents, or their spouses. (4) Notably, most of the interviewees did not think that after signing the Patient Autonomy Act, the medical staff would stop providing treatment or care, nor did they think that signing it was equivalent to simply waiting for death. Conclusions: Although family members of hospitalized patients do not fully understand the Patient Autonomy Act, most of them comprehend that the legislation respects ''the treatment wishes of individuals.'' Therefore, a large proportion of the population is in favor of the concept of individual autonomy. When confronted with their own terminal illness, Taiwanese people adopt different medical decisions than when faced with that of a parent or a spouse. This indicates that the government should strengthen awareness of AD, thereby avoiding decision-making quandaries in cases of terminal illness. (Taiwan J Public Health. 2020|39(3):342-349)