花鸵 - 2008-2-21 17:47:00
Miracle Workers?
Even today, in our high-tech, accountability-obsessed and, supposedly at least, patient-empowered times, the oldest of all relations between patient and physician — that of supplicant to shaman — continues to exert its authority. This may not seem sensible if the only valid criterion for judging the doctor-patient relationship is the use that is made of scientific data and clinical findings. But good doctors want to treat their patients, not just their patients’ diseases, and certainly most patients want to be treated as human beings, not cases. Viewed from that perspective, the elevated expectations patients bring to the consulting room may be for the best.
今天，在我们高科技，高责任心和假设患者权益至上的时期，患者和医师之间最古老的所有联系，正如请求者对巫医一样，仍然发挥重要作用。如果用科学数据和临床研究结果作为判断医患关系唯一有效的标准可能是不明智的。但好医生想要治愈他们的患者， 不仅是患者的疾病；并且许多患者希望医生给予他们多些人文关怀，而不是作为一例病案研究。从透视的角度看患者给咨询室带来的被高估的期望也许是最佳选择。
When my mother found out she had myelodysplastic syndrome, the terrible blood cancer that eventually took her life, she oscillated between numb despair and acute panic. When she was panicked, nothing those who loved her did or said could calm her down, let alone console her. And yet we soon learned that if we could reach Stephen Nimer, her principal physician at the Memorial Sloan-Kettering Cancer Center, by telephone, or if, better still, Dr. Nimer could make time to see my mother, however briefly, her awful distress would abate — at least for a while.
当我的母亲发现了她患有骨髓增生异常综合征时, 这意味着她的后半生将与可怕的血癌做斗争时，她在麻木绝望和深刻恐慌中动摇。当她感到绝望了，那些爱她的人无论做什么或说什么都不能使她平静下来，更不用说安慰她了。我们很快获悉如果我们能联系纪念斯隆－凯特琳癌症中心，她的主治医师Stephen・Nimer。通过电话或其它方法，Nimer博士抽空看望我的母亲，简单地，我的母亲可怕的困扰会消退至少有一段时间。
Observing my mother’s exchanges with Dr. Nimer, I could not help wondering why what he said consoled her. For he never played down the lethality of her disease, nor did he hold out false hope. Doubtless, Dr. Nimer’s long experience with gravely ill people, the hard-won human skills he acquired over decades of practice, played a central role. But it was my sense at the time, and it is my sense now, more than three years after my mother’s death, that the comfort my mother derived from speaking with him was also due to her own conception — her very traditional conception — of their relationship. She was a person who had no time for so-called alternative medicine, nor did she believe that her will would somehow be strong enough to counter the scientific realities. And yet, when all was said and done, I think that my mother’s relationship with her principal doctors can only be fully understood — and was only fully effective — because it was in some ways as shamanistic as the relations our ancestors knew before the advent of modern scientific medicine.
察觉到我的母亲与Nimer 博士的交流，我不禁想知道他说了什么来安慰她。他从未贬低疾病的死亡率，亦不能给予母亲假的希望。毫无疑问地, Nimer 博士的长期与危重病人交流的经验，数十年来之不易的技巧发挥了主要作用。当时我是这么认为的，并且现在我也是这样认为。在我母亲去世的三年多后,我才知道的母亲同他的谈话之所以能安慰她还得归结于她自己非常传统的观念—他们之间的关系。她没有时间选择所谓的替代疗法，也有足够的坚强相信科学的现实。然而，一切都这样说和这样做，我认为我母亲与主治医生的关系，是完全互相理解和充分有效的；因为在现代医学出现之前，我们的祖先就知道某些方面医患关系正如萨满教一样。
Of course, she wanted the science as well as the magic. But the fact that someone so untempted by mystical inclinations could in an important sense be sustained by what was in part a mystical relationship is emblematic of the extraordinary demands that, in extremis, patients cannot help making — demands that are as impossible for doctors to fulfill as they are impossible for patients to forgo.
当然, 她相信科学也希望奇迹的出现。但事实是有人不为神秘的倾向所引诱，可使一个重要的信念持续下去；部分是是超常要求象征性一种神秘的关系，在极端情况下，病人会做出这样的决策—由于不会放弃生的希望，从而要求医生完成不切实际的任务。
Ultimately, it is no doubt simply irrational to expect physicians to simultaneously be great clinicians, great scientists and great psychologists and humanists (as well as great accountants). Some are; but a medical system built on the assumption that such mastery can be normative would be an exercise in folly. Perhaps this is why in recent years, the doctrine of “evidence-based medicine” has become so influential in American medicine. By pushing medical providers to make their decisions almost exclusively on the basis of statistics, this doctrine implies that what is good for a group can be assumed to be good for every individual despite the fact that this is often not the case. Evidence-based medicine may help the physician avoid the subjective and take a harder line on what is medically useful and what is medically futile, but what Dr. Jerome Groopman has called its “strict binary framework” is hardly likely to help a doctor treat a person, as opposed to that person’s disease.
最后,毫无疑问地简单不切实际地期盼医师同时是伟大的临床工作者、伟大的科学家和伟大的心理学家和人道主义者(并且是伟大的会计)。一些是这样; 但一个医疗系统假定这样规范的精通可能会是一种愚蠢的经验。或许这就是为什么近年来, "循证医学"的教条很明显地影响了美国医学。迫使医疗服务提供者完全是在统计学的基础上做出自己的决定，教条说一组是好的也可以假定对于每个个体也是好的；尽管事实上这往往并非如此。循证医学也许帮助医师避免主观错误和采取更加强硬的态度告诉患者在什么是有用的，什么是徒劳。但杰罗姆•格鲁曼博士所谓的"严密二元构架"几乎不可能帮助医生治疗患者和相对应的疾病。
What my mother wanted — which was to undergo any treatment, no matter how terrible, that promised a cure for her disease — would probably have been viewed skeptically by a physician schooled in what Groopman calls the “bean counting” of evidence-based medicine. But doctors like Nimer and Groopman hold that their mission is to try to treat their patients as their patients want to be treated until doing so can be called with assurance (rather than in terms of probability alone) medically futile.
我的母亲经历了什么—任何承诺治愈她的疾病的疗法，无论多么可怕；而接受了格鲁曼称为"豆子统计" 循证医学教育的医生却怀疑她治愈的机率。但像Nimer 和Groopman的医生坚持他们的使命是设法治疗他们的患者像患者想要被治疗的那样，直到这样做 (而不是根据个体的可能性) 医学上认为是无益的
Obviously, there is a cost to this. In opting for treatment — in her case, a bone-marrow transplant — my mother suffered far more physically than she would have had she opted for palliative care alone. But in honoring her wishes, without for a moment understating the risks, her doctors opted for treating her in the full, human sense of the word.
显然地, 这会增加医疗费用。在选择治疗- 像她这种情况,骨髓移植比她所选的姑息治疗带来了更大的痛苦。但是为了尊重她意愿, 医生没有一味地说这样做的风险, 而是选择了以理性对待她的意愿。
Doctors abandon such commitments at their peril. To generalize, after all, is to deny the complexity of each human being. To be sure, these are complicated questions — complicated still further by the democratization of medical information that the Internet has brought us and by the less hierarchical and priestly approach to patients on the part of doctors. Forty years ago, for example, doctors did not typically advise their patients to seek second opinions; today, most good physicians actively encourage it.
医生在危难中放弃这种承诺。一概而论，毕竟，是在否认人性的复杂。当然， 这些是复杂的问题—进一步民主化的医学信息把这个问题复杂化了，互联网给我们带来的病人对部分医生的较低层次和僧侣似的方法。四十年前，医生典型地劝告他们的患者不要寻找第二个选择；今天，许多好医生积极鼓励这种做法。
But information is not knowledge, and there is a real question as to whether a person without medical training can navigate the thickets of information on the Web and distinguish good information from bad. This is not to say that this democratization is a bad thing; only that it poses problems and that, in any case, there are limits to what it can offer us.
但信息不是知识, 并且有一个真正的问题：一个没有受过医疗培训的人是否能在信息网络冲浪并能区别好消息和坏信息。这不是说，民主化是一件坏事；它只是提出问题， 在任何情况下，它可能提供我们什么局限。
In the end, whether or not we welcome the continuation of the old shamanistic relation between the gravely ill and their doctors, it is probably humanly inevitable. Without it, everyone becomes their own physician, and, attractive as that fantasy may be, it is still a fantasy. Of course, this should not be allowed to occlude the fundamental truth that the physician-patient relationship has become murky and even contradictory. What, if anything, we can do about this is another question. In all likelihood, we will all have to live with it and, of course, die with it as well.
最后，我们是否欢迎继续保持危重病人和他们的医生之间的类似老萨满教的关系；从人的角度那是不可避免的。没有这个联系，每个人都会成为他们自己的医师，正如想象中一样吸引人，但仍然是幻想。当然，这不会掩盖医患关系变得黑暗和甚至矛盾的根本真相。当然， 我们怎么做是另外一回事。可能的话, 我们都要学着面对它并且和它一起面临死亡。
David Rieff, a contributing writer, is the author most recently of “Swimming in a Sea of Death: A Son’s Memoir.”
戴维•瑞夫（David Rieff），本文的主要作者，也是《畅游在死亡之海：一个儿子的回忆》的作者。