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中国人对预立医疗指示的态度:患者及其家属的态度。

Attitudes Toward Advance Directives Among Patients and Their Family Members in China.

机构信息

Geriatrics Department, Peking Union Medical College Hospital, Beijing, China.

Geriatrics Department, Peking Union Medical College Hospital, Beijing, China.

出版信息

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.

Abstract

OBJECTIVES

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.

DESIGN

A multicenter cross-sectional survey, conducted from August 1 to December 31, 2016.

SETTING

Twenty-five hospitals located in 15 different provinces throughout mainland China.

PARTICIPANTS

Pairs of adult patients without dementia or malignancies, and a family member.

MEASUREMENTS

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.

RESULTS

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%).

CONCLUSIONS

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.

摘要

目的

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。

设计

一项多中心横断面调查,于 2016 年 8 月 1 日至 12 月 31 日进行。

地点

中国大陆 15 个不同省份的 25 家医院。

参与者

无痴呆或恶性肿瘤的成年患者及其家属。

测量方法

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。

结果

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%)。

结论

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。

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