To Tell or Not: The Chinese Doctors’ Dilemma on Disclosure of a Cancer Diagnosis to the Patient

原标题《告知还是不告知:中国医生在向病人披露癌症诊断时的两难处境》
(本文发表于NIH网(美国国家医学图书馆))

How to tell cancer patients about their diagnosis is approached in different ways across various countries and cultures. For example, in European and North American societies, physicians prefer direct truth telling (1), while in Asian countries, indirect truth telling is more culturally accepted (2). Families usually have major influence over clinicians’ disclosure of diagnosis to patients (3).

在不同的国家和文化中,在将其诊断告知癌症患者时,处理的方式各有不同。比如,在欧洲和北美社会,医生更愿意直接告知病人实情,而在亚洲国家,以间接的方式告知病人实情在文化上更容易被接受。临床医生向病人披露诊断时,家属的影响力往往是很大的。

To investigate the opinions of clinicians in China regarding the disclosure of a cancer diagnosis and the underlying reasons for those opinions, a survey was administered to 180 physicians in Shandong Province in China to obtain the attitudes and relevant reasons regarding the disclosure of a cancer diagnosis to a patient.

为了调查中国临床医生对披露癌症诊断的看法,以及形成这些看法的根本原因,我们对中国山东省的180名医生进行了调查,以获知他们对向病人披露癌症诊断的态度以及相关原因。

We found that it remains difficult for clinicians in China to disclose diagnosis of a cancer, although autonomy has been recognized as an important ethical principle in medical practice. Our study shows that the diagnosis of cancers is often concealed from the patients, but disclosed to the families in China, for most physicians choose to inform the family first, but not the patients, generally based on the intention and desire of the family members, who prefer to conceal the diagnosis to the patients, considering the diagnosis would be a hard blow to the patients psychologically.

我们发现,尽管自主权被认为是医疗实践中的重要伦理原则,但在中国,临床医生仍然很难去披露癌症诊断。我们的研究表明,在中国,癌症诊断往往都是瞒着病人的,但会披露给家属,因为大部分医生会选择先知会家属而不是病人,一般来说,都是根据家属的意图和愿望来操作的,而家属更愿意对病人隐瞒诊断,个中考虑是:诊断会对病人造成沉重的心理打击。

This study shows majority (98%) of the physicians would discuss the cancer diagnosis with family members before discussing it with the patient, and 82% of them will not tell the patient if the family requests “not to tell”. This phenomenon has been deeply rooted in the traditional Chinese culture -- Confucianism.

这项研究显示,大多数(98%)医生会在和病人讨论癌症诊断前先和家属讨论,如果家属要求“不要告诉”,82%的医生是不会告诉病人的。这种现象已经在中国传统文化(也即儒家思想)中扎根了。

Confucianism regards human relations, rather than individual rights, as the basis of morality. The notion of the family (Jiā in Chinese) has a central position in Confucian classics, and the family is the basic autonomous unit. According to the Confucianism, when a patient was diagnosed with a cancer, his/her family members would deem it as their responsibility and even their natural right to make medical decision. If they think that it is harmful to inform the diagnosis to the patient, they usually request the doctor to dilute the severity of the disease, delay to tell, and even completely hide the diagnosis from the patient (4).

儒家思想认为,人与人之间的关系(而不是个体权利)是道德的基础。家的概念在儒家经典中居于核心地位,家庭是基本的自主性单位。根据儒家思想,当一个病人被诊断出癌症时,他/她的家庭成员会认为作出医疗决策是他们的责任,甚至会将其看作他们的自然权利。如果他们认为将诊断结果告知病人会造成伤害,他们通常会要求医生淡化病情的严重性,推迟告知,甚至是完全隐瞒诊断结果。

Our data shows that if the patients happened to be members of the physicians’ own families, nearly half of physicians would want to withhold the diagnosis. Modern Asian societies including China has been experiencing a transition, mainly due to the influence of the Western culture. Contemporary Chinese culture is a mixture of many values and beliefs from the ancient to the modern, and from the Western to the Eastern. Since the second half of the 1990s, more Japanese patients have received disclosure of a diagnosis of cancer than before (5). Most of the patients in China today hope their doctor to tell them the truth even if they have been diagnosed with cancer. Our study shows that if physicians themselves were diagnosed with cancer, 81% of them would want to know the diagnosis. There have been arguments whether the “Chinese family-based model” should be replaced by the Western model in order to respect the “autonomy” of Chinese patients. On the other hand, some argue that Asian bioethicists must develop a bioethics responding to their own cultural context (6).

我们的数据显示,如果病人恰好是医生自己的家庭成员,则有近一半的医生希望能隐瞒诊断。包括中国在内的现代亚洲社会一直在经历某种转型,主要是因为受到西方文化的影响。当代中国文化融合了从古至今,从西方到东方的诸多价值观和信仰。自九十年代后半页以来,被披露癌症诊断的日本病人比以前更多了。在今天的中国,大部分病人就算自己被诊断出癌症,也希望他们的医生能告诉他们真相。我们的研究表明,如果医生自己被诊断出癌症,81%的人是希望知道诊断结果的。为了尊重中国病人的“自主权”,是否应该用西方模式来取代“以家庭为基准的中国模式”,一直都存在争论。另一方面,有些人主张,亚洲的生命伦理学家必须发展出符合自身文化环境的生命伦理学。

In light of the current tendency towards more disclosure globally, and the fact that the majority of cancer patients in China want to know their diagnosis, the authors proposed a suggestion for resolution based on traditional “Chinese family-based model”. Before the diagnosis is disclosed, the doctor, the patient, and the family should discuss about who will be informed first, regardless of whether the diagnosis is good or not. Indeed, it is the patient’s right to decide whether to know or not.

鉴于目前全球范围内信息披露变多的趋势,以及中国的大部分癌症患者希望知道自己的诊断,为了解决这个问题,作者们提出了一种基于传统的“中国式以家庭为基准的模式”的建议。在披露诊断结果之前,医生、病人和家属应该就先告知谁展开讨论,无论诊断结果是好是坏。决定是否知情确实是病人的权利。

So the decision should be highly rely on the intention of the patient himself/herself. If the patient choose “to be informed”, he or she should first discuss with their family members, which might be helpful to make a better decision. They can also ask advice from the doctor, who can help them to make a more reasonable decision from more professional point of view.

因此,该决定应该在很大程度上取决于病人自己的意愿。如果病人选择“被告知”,他/她应该先和家庭成员讨论,这可能有助于更好地作出决定。他们也可以征求医生的建议,医生可以从更专业的角度帮助他们作出更合理的决定。