我将死去,但仍前行——一名斯坦福外科医生的生死智慧
2015-04-23

本文最初发表于2014年1月26日的《斯坦福医学》杂志,作者保罗-卡兰斯(Paul Kalanithi),是斯坦福医院神经外科的住院总医生。

2013年,作为医生的他被确诊患了肺癌。于是,他写下了这篇感受生死的文章,遗憾的是,最新消息已经传来,保罗-卡兰斯于2015年3月9日去世,享年37岁。

当CT扫描完成后,我立刻开始看片子。

诊断结果随即出来了:双肺大片包块,脊椎变形。癌症。

在我的神经外科生涯中,我曾和医生同行们共同会诊过上千张片子,确认手术是否能带来希望。我会在病历上匆匆写下几笔:癌症广泛转移——无手术指征。接着就继续干别的事情了。只是,这张片子不一样:它是我自己的CT扫描。

我曾与无数病人和他们的家属坐在一起,讨论他们冷酷的前景:这就是医生要做的最重要的工作之一。如果病人是94岁,患有终末期的失忆症,出现严重脑出血,谈话要容易些。可对于像我这样的年轻人——我36岁,并且确诊是癌症,能说的话就没有多少了。

我的标准说法包括“这是场马拉松,不是冲刺,所以你每天得休息好”,以及“疾病可以让一家人四分五裂,也可以让大家团结起来——你们要了解身边人的需求,并且寻求外界支持。”

我从中学到了几条最基本的规则。

谈到病情预后时需要坦诚,但又要留下希望的空间。

说话时既要含糊又要准确:“从几天到几周”,“从几周到几个月”,“从几个月到几年”,“从几年到十年或者更久”。我们从不引用具体的数据,通常建议病人和家属不要在网上搜索存活期的数字,因为我们猜想普通的病人无法细致入微地理解数据。

在听到“X疗法的生存率为70%”和“Y疗法的死亡率为30%”时,反应是不一样的。听到这样的表述,人们会蜂拥选择X疗法,哪怕这两种疗法的实际效果实际上一样。

我的一个好友得了胰腺癌,结果我就成了他亲友团的医学顾问,尽管他们都是非常资深的统计学家。我仍然劝他们不要查找数据,跟他们说现在能找到的五年生存曲线至少落伍了五年。不知怎的,我总觉得光是这些数字还太干巴巴了,或者说,医生与疾病每天打交道的过程中,还需要得到更多的来龙去脉。更重要的是,我有这样一种冲动:保持希望。

这些生存率曲线称为卡普兰-迈耶曲线(Kaplan-Meier curves),通过它我们可以了解癌症治疗的进展,预知病人存活的时间。对于一些疾病来说,这条曲线看起来像是飞机缓缓着陆;而对于另一些疾病,看起来则像是俯冲的轰炸机。医生们对这些曲线、它们的形态以及意义考虑良多。比方说在脑癌研究中,尽管平均生存期数字改变并不是很大,但曲线图拖着的尾巴越来越长,这意味着一些病人已经存活了多年。问题是,你没法判断某位病人处于曲线图上的什么位置。竭力追求数据的精确无误,这是不可能,甚至不负责任的。

你可能会以为,当我的肿瘤医生坐在我的病床边与我会面时,我不会立刻请她告诉我有关生存期的数据。但现在,我已经从医生的角色滑到了病人那一头,我也和所有病人一样,渴望了解具体的数字。我希望她能认识到,我既了解数据,同时也知道关于疾病的医学真相,因此她应该能为我提供准确的、直截了当的结论。我能接受得了。

她干脆地拒绝了:“不,绝对不行。”她知道我会查找关于这种疾病的所有研究——我确实这样做了。但肺癌不是我的专长,而她是这个领域的国际权威。在每次看病时,我们都要进行一场角力比赛,而她总是闪躲着,不提及任何一个数字。

现在,我不再为一些病人执意追问数字而感到困惑了,我反而开始想,为什么医生在掌握了这么多知识,有这么多经验的情况下,还要把问题弄得这么云山雾罩。我刚看到自己的CT片子时,认为只有几个月好活了。片子看起来很糟糕。我看起来很糟糕。我瘦了30磅,出现了严重的背痛,一天比一天觉得虚弱。我的血检报告显示蛋白水平极低,红细胞计数也很低,这跟我身体的感觉一样:它已经无法满足生存下去的基本动力了。

几个月来,我一直怀疑自己得了癌症,我看过很多年轻的癌症病人,所以得知结果时我一点也不吃惊。事实上,我还感觉有些如释重负。接下来要做的事情很明显:准备去死。大哭。告诉妻子她应该再嫁,然后为房贷筹钱。给好朋友写迟寄的信。是的,我本想在这辈子做很多事情,但有时这种事情就是会发生:当你平日的工作就是治疗头部受重伤和脑癌病人时,结局是什么,对你再明显不过了。

可是,在我与我的肿瘤医生第一次见面时,她谈到了有朝一天我将重返工作岗位。那时我会是游魂吗?不会。可是,我能有多长时间?沉默。

当然,她也不能阻止我大量阅读文献。在查找资料时,我总是想找到一份报告,能告诉我一个准确的数字。大量研究显示70%-80%的肺癌病人将在两年内死亡。这没有给我带来多少希望。可是话说回来了,大部分病人年纪都更大,而且大量吸烟。有没有一份研究针对的是不吸烟的36岁神经外科医生?我年纪轻、身体好,也许这会有帮助?又或者,因为我的病发现得太晚,又扩散到远处,我的情况远比那些65岁的吸烟人士来得更糟糕?

我的很多亲友对我讲述了种种故事,比如朋友的朋友的妈妈的朋友或者叔叔的理发师的儿子的网球搭档得了和我一样的肺癌,现在已经活了10年。刚开始时,我寻思着这些故事的主角是不是同一个人,通过众所周知的六度分隔理论联系在一起。我觉得这些故事无非是一厢情愿的想法、毫无根据的幻想。可是最后,这些故事渐渐潜入了我精通的现实主义的缝隙中。

接着,我的健康开始慢慢好转,这得归功于一种靶向药,专门针对跟我的癌症有关的某种特定基因突变。我可以不用拄拐杖走路了,也可以说这样的话:“嗯,能幸运地活10年,这对我真的不大可能,不过也不是完全希望。”一丁点的希望。

不过,从某个角度来说,死亡的确定性比这个不确定的生命更加简单。那些身在炼狱的灵魂难道不是情愿赶紧下地狱,好结束这一切吗?我是不是应当做好葬礼安排?我是不是应该把全部时间用来陪伴妻子、父母、兄弟、朋友和我可爱的小侄女?写一本我早就想写的书?又或者应该回到医院,和老板协商今后两年的合同?

如果我知道等待自己的是几个月还是几年,前路或许会明朗很多。说我还有三个月,我会去陪伴家人。说我还有一年,我可以制订一个计划(写完那本书)。说我还有10年,我可以回医院治病救人。“活在当下”的老一套说辞没什么意义:我应当拿当下怎么办呢?我的肿瘤医生只是这样说:“我没法给你一个具体时间。你需要去发现对你最重要的事物。”

我开始意识到,与自己的死亡狭路相逢,这改变了一切,同时又什么都未曾改变。

在癌症确诊前,我知道有一天自己会死,但我并不知道那是什么时候的事情。在确诊后,我知道有一天自己会死,但仍然不知道是什么时候。而现在我已经深切地知道了。这并不是一个真正科学的问题。有关死亡的事实令人坐立不安。然而只要是活着,就别无他法。

医生们之所以不能向病人提供确切的预后,不仅仅是因为他们做不到。当然了,如果病人的预期完全超过了合理范围——有些人希望自己能活到130岁,也有些人看到身上的一粒小痣就觉得死期将至——医生们有义务将对方的预期拉回到合理的可能范围内。

可是,合理的可能范围仍然十分宽泛。根据现在的治疗方案,我有可能在两年内死亡,也有可能再撑10年。如果你再将今后两三年可能出现的新治疗带来的不确定性考虑进来,这个范围可能又会完全不一样了。面对死亡时,科学知识只能提供一盎司的确定性:是的,你会死。可是,总有人想要满满一磅的确定性,而这还无法实现。

病人想寻找的并不是医生们遮遮掩掩的科学知识,而是每个人都必须通过自己的力量找到的已经存在着的真实性。在数据里陷得太深,如同喝盐水来止渴。面对死亡的愤懑,无法用未知的概率来治疗。

我清楚地记得一个时刻:快要将我吞噬的不安突然慢慢消退。那时,我想起了塞缪尔·贝克特(Samuel Beckett)写过的九个字,我在多年前上大学时读过他的书,不过一直都没好好读过,但在那个瞬间,这句话清晰地在我脑海中重现,而眼前那个看来不可逾越的不确定的海洋突然分开了:“我无法前行。我将前行。”我往前走了一步,反复咀嚼着这句话:“我无法前行。我将前行。”接着,到了某一个节点,我获得了顿悟。

现在,距离确诊已经过去了八个月。我的体力显著恢复了。在治疗中,癌症暂时蛰伏。我渐渐重返工作。我拂去了研究手稿上的浮尘。我写得更多、看得更多、感受更多。每天早上5点半,当我按下闹铃,僵死的身体苏醒,而妻子仍在我身边酣睡时,我会又一次对自己说:“我无法前行。”过了一分钟,我已经穿上了刷手衣,走在去手术室的路上,仍然活着:“我将前行。”

How Long Have I Got Left?

AS soon as the CT scan was done, I began reviewing the images. The diagnosis was immediate: Masses matting the lungs and deforming the spine. Cancer. In my neurosurgical training, I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. I’d scribble in the chart “Widely metastatic disease — no role for surgery,” and move on. But this scan was different: It was my own.

I have sat with countless patients and families to discuss grim prognoses: It’s one of the most important jobs physicians have. It’s easier when the patient is 94, in the last stages of dementia and has a severe brain bleed. For young people like me — I am 36 — given a diagnosis of cancer, there aren’t many words. My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”

I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate: “days to a few weeks,” “weeks to a few months,” “months to a few years,” “a few years to a decade or more.” We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics.

People react differently to hearing “Procedure X has a 70 percent chance of survival” and “Procedure Y has a 30 percent chance of death.” Phrased that way, people flock to Procedure X, even though the numbers are the same. When a close friend developed pancreatic cancer, I became the medical maven to a group of people who were sophisticated statisticians. I still dissuaded them from looking up the statistics, saying five-year survival curves are at least five years out of date. Somehow I felt that the numbers alone were too dry, or that a physician’s daily experience with illness was needed for context. Mostly, I felt that impulse: Keep a measure of hope.

These survival curves, called Kaplan-Meier curves, are one way we measure progress in cancer treatment, plotting the number of patients surviving over time. For some diseases, the line looks like an airplane gently beginning its descent; for others, like a dive bomber. Physicians think a lot about these curves, their shape, and what they mean. In brain-cancer research, for example, while the numbers for average survival time haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate.

One would think, then, that when my oncologist sat by my bedside to meet me, I would not immediately demand information on survival statistics. But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for. I hoped she would see me as someone who both understood statistics and the medical reality of illness, that she would give me certainty, the straight dope. I could take it. She flatly refused: “No. Absolutely not.” She knew very well I could — and did — look up all the research on the topic. But lung cancer wasn’t my specialty, and she was a world expert. At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.

Now, instead of wondering why some patients persist in asking statistics questions, I began to wonder why physicians obfuscate when they have so much knowledge and experience. Initially when I saw my CT scan, I figured I had only a few months to live. The scan looked bad. I looked bad. I’d lost 30 pounds, developed excruciating back pain and felt more fatigued every day. My tests revealed severely low protein levels and low blood counts consistent with the body overwhelmed, failing in its basic drive to sustain itself.

For a few months, I’d suspected I had cancer. I had seen a lot of young patients with cancer. So I wasn’t taken aback. In fact, there was a certain relief. The next steps were clear: Prepare to die. Cry. Tell my wife that she should remarry, and refinance the mortgage. Write overdue letters to dear friends. Yes, there were lots of things I had meant to do in life, but sometimes this happens: Nothing could be more obvious when your day’s work includes treating head trauma and brain cancer.

But on my first visit with my oncologist, she mentioned my going back to work someday. Wasn’t I a ghost? No. But then how long did I have? Silence.

Of course, she could not stop my intense reading. Poring over studies, I kept trying to find the one that would tell me when my number would be up. The large general studies said that between 70 and 80 percent of lung cancer patients would die within two years. They did not allow for much hope. But then again, most of those patients were older and heavy smokers. Where was the study of nonsmoking 36-year-old neurosurgeons? Maybe my youth and health mattered? Or maybe my disease was found so late, had spread so far, and I was already so far gone that I was worse off than those 65-year-old smokers.

Many friends and family members provided anecdotes along the lines of my-friend’s-friend’s-mom’s-friend or my-uncle’s-barber’s-son’s-tennis-partner has this same kind of lung cancer and has been living for 10 years. Initially I wondered if all the stories referred to the same person, connected through the proverbial six degrees. I disregarded them as wishful thinking, baseless delusion. Eventually, though, enough of those stories seeped in through the cracks of my studied realism.

And then my health began to improve, thanks to a pill that targets a specific genetic mutation tied to my cancer. I began to walk without a cane and to say things like, “Well, it’s pretty unlikely that I’ll be lucky enough to live for a decade, but it’s possible.” A tiny drop of hope.

In a way, though, the certainty of death was easier than this uncertain life. Didn’t those in purgatory prefer to go to hell, and just be done with it? Was I supposed to be making funeral arrangements? Devoting myself to my wife, my parents, my brothers, my friends, my adorable niece? Writing the book I had always wanted to write? Or was I supposed to go back to negotiating my multiyear job offers?

The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.”

I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

The reason doctors don’t give patients specific prognoses is not merely because they cannot. Certainly, if a patient’s expectations are way out of the bounds of probability — someone expecting to live to 130, or someone thinking his benign skin spots are signs of impending death — doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility.

But the range of what is reasonably possible is just so wide. Based on today’s therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years, that range may be completely different. Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer.

What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.

I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett, a writer I’ve not even read that well, learned long ago as an undergraduate, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on.” And then, at some point, I was through.

I am now almost exactly eight months from my diagnosis. My strength has recovered substantially. In treatment, the cancer is retreating. I have gradually returned to work. I’m knocking the dust off scientific manuscripts. I’m writing more, seeing more, feeling more. Every morning at 5:30, as the alarm clock goes off, and my dead body awakes, my wife asleep next to me, I think again to myself: “I can’t go on.” And a minute later, I am in my scrubs, heading to the operating room, alive: “I’ll go on.”

Paul Kalanithi is a chief resident in neurological surgery at Stanford University

来源:文汇教育(wenhuieducation)
    责编: Lisa

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