肿瘤科医生说的话,癌症患者能听懂吗?

12-11 03:06 首页 SIBCS


  当医生与患者讨论重大健康问题时,必须使用双方均能理解的语言进行沟通。


  • 作者:安德鲁·麦克唐纳(2007年被诊断为帕金森病,2010年被诊断为前列腺癌,2014年退休前为英国独立议会标准管理局首席执行官,现任英国伦敦残疾人慈善组织Scope基金会理事长)

  • 翻译:杨路(中国医学科学院肿瘤医院)

  • 审校:王燕(中国医学科学院肿瘤医院)

  • 引用:英国医学杂志中文版. 2017;20(10):593-594.




  今年秋天,英国国家剧院将上演歌剧《反战主义者关于癌症的战争指南》。当听到这个消息以后,你的第一反应会是什么呢?你会认为它品味低俗,觉得反感厌恶吗?你会认为剧院已经没有更好的歌剧上演,而备感失望吗?或者你会因为即将揭开这个严肃话题的神秘面纱,而感到宽慰吗?


  我是最后的一种反应,但是我的想法可能有些不一样。2010年,我患上了前列腺癌;3年前医生宣布我的病是无法治愈的。在这几年中,我对医生与患者之间就严重疾病的沟通方式产生了兴趣,并思考如何改进这种沟通方式。我认为,要提高医患沟通质量,我们就要在探讨病情时多用比喻修辞,让医患双方能够用双方共同理解的语言进行交流。


  让我通过几个术语来证实一下上面的观点。这些术语是肿瘤科医生和患者讨论癌症的治疗方案时经常用到的。


肿瘤包括良性肿瘤恶性肿瘤恶性肿瘤又包括起源于上皮组织的和起源于其他组织的肉瘤、淋巴瘤、白血病、间皮瘤、神经胶质瘤、胎盘瘤等。一般人们所说的癌症,习惯上泛指所有恶性肿瘤。


  癌症幸存者

  • 患者的理解:这个人的癌症已经治愈了。

  • 医生的意思:这个人从诊断为癌症以后5年还活着。


  所以,我算是一位癌症幸存者,但是感觉好像不太对劲。


  缓解

  • 患者的理解:虽然癌症没有治愈,但是它在以后很长一段时间内不会再出现了。

  • 医生的意思:目前我们暂时没有发现癌症进展的证据。


  良性肿瘤

  • 患者的理解:虽然这不是什么好消息,但是这个肿瘤不会危害我的生命。

  • 医生的意思:在你体内,有一团组织在不受控制地生长,但是它不会转移。


  恶性肿瘤

  • 患者的理解:这是坏消息,它会危害我的生命。

  • 医生的意思:这个肿瘤会转移。根据肿瘤的分期与病理类型,有的恶性肿瘤可能意味着坏消息,甚至可能危及到你的生命;有的或许也没有那么糟糕。


  转移

  • 患者的理解:尽管我没有特别明白,但这肯定是个非常可怕的事情。

  • 医生的实际意思是:这个肿瘤不仅可以侵犯临近组织,还可以通过循环系统转移到全身其他脏器。如果它已经转移了,那么这的确是一个坏消息。


  无法治愈

  • 患者的理解:这代表我到了生命的终点站。

  • 医生的意思:我们无法治愈它。但是根据肿瘤的分期和类型,我们采取相应治疗后,或许可以在相当长一段时间内控制病情。


  终末期

  • 患者的理解:人生谢幕。

  • 医生的意思:人生谢幕可能还有6个月。


  缓和(姑息、保守、治标、对症)

  • 患者的理解:人生谢幕之前,医生想做的只是让我舒服一些,他们帮我把枕头弄鼓一些,然后给我维持生命的葡萄糖和减缓疼痛的吗啡。

  • 医生的意思:人生谢幕之前,我们仍会提供治疗,必要时也可能会用巴祖卡反坦克火箭炮(猛药)。


  医患之间在理解上的偏差的确会耽误患者的治疗。因此,医生在向患者解释他们的想法时,应该努力消除彼此之间理解上的偏差,或者,最好也避免使用模棱两可的说法。虽然有些理解上的差异看似不大;但如果从患者的角度考虑,这些理解上的差异将会产生相当重要的影响。而且,这些术语经常会一起使用;例如,医生可能把我描述为一名恶性肿瘤转移的幸存者。这种说法只会让事情变得更加令人费解。那么,在谈论癌症话题时,我们是不是应该寻求一种医患双方都能理解的新语言呢?


  这种医患双方共同认可的语言一旦建立,将成为提高医患沟通质量的良好开端。诚然,这离实现患者全程参与制定治疗方案的目标还相去甚远;但假若我们不从改善彼此之间的理解开始,那么这个目标将更加遥不可及。


BMJ. 2016 Aug 16;354:i4453.


What doctors say and what patients hear.


McDonald A.


Scope, 6 Market Road, London N7 9PW.


When discussing serious health problems doctors and patients must speak a common language, says Andrew McDonald


This autumn the National Theatres repertoire will include a musical called A Pacifists Guide to the War on Cancer. Whats your first reaction? Revulsion at the poor taste of those involved? Despair that the theatre has nothing better to do? Or relief that a serious topic may be stripped of its mythology?


Im in that last camp. But then, my perspective might be deemed somewhat peculiar: Ive had prostate cancer since 2010, and three years ago it was declared incurable. Along the way Ive acquired an interest in how health professionals communicate with patients about serious illnesses—and how this might be done better. To me, improving communication must start with looking at our use of metaphor in discussions of disease and working to ensure that professionals and patients use a common language to communicate.


Let me illustrate that last point by citing some terms often used by oncologists when discussing cancer treatments with their patients:


Cancer survivor

  • What patients hear: Somebody cured of cancer

  • What doctors mean: Somebody still breathing five years after diagnosis. (So, Im a cancer survivor. It doesnt feel like that)


In remission

  • What patients hear: Not cured, but the cancer wont be around for a good while

  • What doctors mean: We cant see evidence of cancer in your body today


Benign tumour

  • What patients hear: It isnt good news, but it wont kill me

  • What doctors mean: You have a mass of tissues growing out of control, but theyre not capable of metastasis


Malignant tumour

  • What patients hear: Its bad news, and it might kill me

  • What doctors mean: The tumour is capable of metastasis. Depending on the tumour type and stage, it might be bad news and it might kill you . . . or not


Metastasis

  • What patients hear: I dont really know, but its very bad news

  • What doctors mean: Your tumour is capable of spreading systemically through your body and not just to adjacent tissues. If it has already performed this trick, then this is bad news


Incurable

  • What patients hear: Terminal

  • What doctors mean: We cant cure it. But, depending on the grade and type, we might be able to keep it at bay for a long time


Terminal

  • What patients hear: Curtains

  • What doctors mean: Curtains within six months


Palliative

  • What patients hear: Prelude to curtains—theyre just going to plump up my pillow and give me Lucozade and morphine

  • What doctors mean: It is curtains, but well still offer to treat you, in some cases with big bazookas


Do these misunderstandings hamper patient care? Well, not if the doctor closes the gap by explaining what he or she means—or, better still, avoids the more slippery terms altogether. I agree that some of the differences in meaning might seem modest; but put yourself in the patients place and those shades of meaning become much, much more important. And, of course, terms are often used in combination, which only confuses matters further. I, for example, might be described as a cancer survivor with malignant, metastatic tumours. Is it perhaps time for a new, shared language of cancer?


The development of such a language, securely founded in shared meanings, would be a good first step towards better communication between professionals and patients. It would not, of course, deliver the goal of full participation in decision making, but that goal will remain elusive unless we begin by understanding one another.


PMID: 27530907


DOI: 10.1136/bmj.i4453







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