Geriatrics Department, Peking Union Medical College Hospital, Beijing, China.
Geriatrics Department, Peking Union Medical College Hospital, Beijing, China.
J Am Med Dir Assoc. 2017 Sep 1;18(9):808.e7-808.e11. doi: 10.1016/j.jamda.2017.05.014. Epub 2017 Jul 1.
Chinese people are generally unfamiliar with the concept of advance care planning or advance directives (ACP/ADs), which raises dilemmas in life-support choice and can even affect clinical decision making. To understand and address the issues involved better, we investigated the awareness of ACP/ADs in China, as well as people's attitudes toward medical autonomy and end-of-life care.
A multicenter cross-sectional survey, conducted from August 1 to December 31, 2016.
Twenty-five hospitals located in 15 different provinces throughout mainland China.
Pairs of adult patients without dementia or malignancies, and a family member.
Participants self-filled anonymous questionnaires, and the data collected were analyzed to relate patients' sociodemographic characteristics to their awareness of ACP/ADs and attitudes to health care autonomy and end-of-life care.
Among 1084 patients who completed the questionnaire, 415 (38.3%) had heard about ACP/ADs. Having been informed about ACP/ADs, 995 (91.8%) were willing to find out their true health status and decide for themselves; 549 (50.6%) wanted to institute ACP/ADs. Regarding end-of-life care, 473 (43.6%) chose Do Not Resuscitate, and 435 (40.1%) wished to forgo life-support treatment if irreversibly moribund. Patients predominantly (481, 44.4%) chose general hospital as their preferred place to spend their last days of life; only 114 (10.5%) favored a special hospice facility. Patients' main concerns during end-of-life care were symptom control (35.1%), followed by functional maintenance and quality of life (29.8%), and prolonging life (18.9%). More highly educated patients had significantly greater awareness of ACP/ADs than less well educated ones (χ = 59.22, P < .001) and were more willing to find out the truth for themselves (χ = 58.30, P ≤ .001) and make medical decisions in advance (χ = 55.92, P < .001). Younger patients were also more willing than older ones to know the truth (χ = 38.23, P = .001) and make medical decisions in advance (χ = 18.42, P = .018), and were also more likely to wish to die at home (χ = 96.25, P < .001). Only 212 patients' family members (19.6%) wanted life-support treatment for themselves if irreversibly moribund, whereas 592 (54.6%) would want their relative to receive such procedures in the same circumstances; a similar discrepancy was evident for end-of-life invasive treatment (18.3% vs 42.7%).
Awareness about ACP/ADs in China is still low. Providing culturally sensitive knowledge, education, and communication regarding ACP/ADs is a feasible first step to promoting this sociomedical practice.
中国人普遍不了解预先医疗护理计划或预先指示(ACP/AD)的概念,这在生命支持选择方面造成了困境,甚至可能影响临床决策。为了更好地理解和解决相关问题,我们调查了中国人对 ACP/AD 的认知,以及人们对医疗自主权和临终关怀的态度。
一项多中心横断面调查,于 2016 年 8 月 1 日至 12 月 31 日进行。
中国大陆 15 个不同省份的 25 家医院。
无痴呆或恶性肿瘤的成年患者及其家属。
参与者填写匿名问卷,收集的数据用于分析患者的社会人口统计学特征与其对 ACP/AD 的认知以及对医疗自主权和临终关怀的态度之间的关系。
在完成问卷的 1084 名患者中,有 415 名(38.3%)听说过 ACP/AD。在得知 ACP/AD 后,995 名(91.8%)愿意了解自己的真实健康状况并自行决定;549 名(50.6%)希望制定 ACP/AD。关于临终关怀,473 名(43.6%)选择不复苏,435 名(40.1%)如果处于不可逆转的病危状态,希望放弃生命支持治疗。患者主要(481 名,44.4%)选择综合医院作为度过生命最后几天的首选地点;只有 114 名(10.5%)青睐专门的临终关怀机构。患者临终关怀的主要关注点是症状控制(35.1%),其次是功能维持和生活质量(29.8%)以及延长生命(18.9%)。受教育程度较高的患者对 ACP/AD 的认知明显高于受教育程度较低的患者(χ²=59.22,P<.001),并且更愿意为自己寻找真相(χ²=58.30,P≤.001)并提前做出医疗决策(χ²=55.92,P<.001)。年轻患者也比老年患者更愿意了解真相(χ²=38.23,P=.001)并提前做出医疗决策(χ²=18.42,P=.018),也更希望在家中去世(χ²=96.25,P<.001)。只有 212 名患者家属(19.6%)如果处于不可逆转的病危状态,希望接受生命支持治疗,而 592 名(54.6%)希望在同样情况下其亲属接受此类治疗;临终时进行有创治疗的情况也存在类似的差异(18.3%对 42.7%)。
中国人对 ACP/AD 的认识仍然很低。提供有关 ACP/AD 的文化敏感知识、教育和沟通是促进这一社会医学实践的可行的第一步。