沒人是活該的。
Nobody has it coming.
我知道,威廉·卡洛斯·威廉姆斯和理查德·塞澤爾曾經(jīng)承認(rèn)他們干過比我更壞的事情,但我一點(diǎn)也不覺得安慰。我發(fā)誓要做得更好。滿目的人間悲劇與痛苦失敗,我真怕自己已經(jīng)看不見人類關(guān)系最非凡的重要性了,不是病人和家屬之間的關(guān)系,而是醫(yī)生與病人之間的關(guān)系。專業(yè)技術(shù)出色是不夠的。人人終有一死,作為一名住院醫(yī)生,我的最高理想不是挽救生命,而是引導(dǎo)病人或家屬去理解死亡或疾病。要是一個(gè)病人腦出血,救不了了,送到醫(yī)院來,神經(jīng)外科醫(yī)生與家人的第一次談話,可能將永久決定他們對(duì)這場(chǎng)死亡的感覺,有可能是平和地接受(“也許他該走了”),也有可能是痛苦的遺憾(“那些醫(yī)生根本不聽我們說!他們都沒努力去救他!”)。要是手術(shù)刀沒有用武之地,外科醫(yī)生唯一的工具,就是言語(yǔ)。
I took meager solace in knowing that William Carlos Williams and Richard Selzer had confessed to doing worse, and I swore to do better. Amid the tragedies and failures, I feared I was losing sight of the singular importance of human relationships, not between patients and their families but between doctor and patient. Tech-nical excellence was not enough. As a resident, my highest ideal was not saving lives—everyone dies eventually—but guiding a patient or family to an understanding of death or illness. When a patient comes in with a fatal head bleed, that first conversation with a neurosurgeon may forever color how the family remembers the death, from a peaceful letting go (“Maybe it was his time”) to an open sore of regret (“Those doctors didn’t listen! They didn’t even try to save him!”). When there’s no place for the scalpel, words are the surgeon’s only tool.
嚴(yán)重的腦損傷會(huì)帶來超乎尋常的痛苦,而家人的痛苦往往要?jiǎng)儆诓』?,看不到完整意義的,不僅僅是醫(yī)生。圍繞在床邊的家人,看著他們親愛的人頭部面目全非,腦子完全傷成一團(tuán)糨糊,他們通常也看不到完整的意義。他們看到的是過去,是點(diǎn)點(diǎn)滴滴累積起來的回憶,因?yàn)楫?dāng)下遭遇而感受到的更深的愛,全都由眼前這具軀體所代表。我看到的是病人可能面對(duì)的未來,通過手術(shù)在脖子上開個(gè)口子,和呼吸機(jī)連在一起;肚子上開個(gè)洞,黏糊糊的液體一滴滴流進(jìn)去;可能要經(jīng)歷很長(zhǎng)、很痛苦的恢復(fù)過程,還不一定能完全恢復(fù);有時(shí)候,更有可能的是,根本變不回他們記憶中的那個(gè)人了。在那樣的時(shí)刻,我拋棄了平時(shí)最常扮演的角色,不再是死神的敵人,而是使者。我必須幫助這些家人明白,他們所熟知的那個(gè)人,那個(gè)充滿活力的完整的人,現(xiàn)在只存在于過去了,我需要他們的幫助,來決定他/她想要的未來:輕松地一死百了,還是一袋袋的液體這邊進(jìn),那邊出,盡管無力掙扎,也要堅(jiān)持活下去。
For amid that unique suffering invoked by severe brain damage, the suffering often felt more by families than by patients, it is not merely the physicians who do not see the full significance. The families who gather around their beloved—their beloved whose sheared heads contained battered brains—do not usually recognize the full significance, either. They see the past, the accumulation of memories, the freshly felt love, all represented by the body before them. I see the possible futures, the breathing machines connected through a surgical opening in the neck, the pasty liquid dripping in through a hole in the belly, the possible long, painful, and only partial recovery—or, sometimes more likely, no return at all of the person they remember. In these moments, I acted not, as I most often did, as death’s enemy, but as its ambassador. I had to help those families understand that the person they knew—the full, vital independent human—now lived only in the past and that I needed their input to understand what sort of future he or she would want: an easy death or to be strung between bags of fluids going in, others coming out, to persist despite being unable to struggle.
要是年少時(shí)接觸宗教更多一些,我可能會(huì)成為一個(gè)牧師。因?yàn)槲宜非蟮?,其?shí)就是一個(gè)牧師的角色。
Had I been more religious in my youth, I might have become a pastor, for it was the pastoral role I’d sought.
調(diào)整過我的思想重心以后,病人簽署授權(quán)手術(shù)的同意書,意義就不那么簡(jiǎn)單了。這不再是一套迅速告知手術(shù)所有風(fēng)險(xiǎn)的司法程序,就像某種新藥品廣告里快速念一遍的副作用,而是一次機(jī)會(huì),可以和正在承受痛苦的同胞訂立盟約:我們?cè)诖斯簿垡惶?,一起走過接下來的路。我承諾盡自己所能,引導(dǎo)你走向彼岸。
With my renewed focus, informed consent—the ritual by which a patient signs a piece of paper, authorizing surgery—became not a juridical exercise in naming all the risks as quickly as possible, like the voiceover in an ad for a new pharmaceutical, but an opportunity to forge a covenant with a suffering compatriot: Here we are together, and here are the ways through—I promise to guide you, as best as I can, to the other side.
住院醫(yī)生生涯到這個(gè)時(shí)候,我的工作效率有所提高,經(jīng)驗(yàn)也更加豐富,我終于可以稍稍松口氣,不再為了自保而疲于奔命。現(xiàn)在的我已經(jīng)完全承擔(dān)起了為病人創(chuàng)造福祉的責(zé)任。
By this point in my residency, I was more efficient and experienced. I could finally breathe a little, no longer trying to hang on for my own dear life. I was now accepting full responsibility for my patients’ wellbeing.
我想到了父親。醫(yī)學(xué)院時(shí)期,露西和我都去過他在金曼的病房,跟著他查過房,看著他安慰病人,同時(shí)又告知他們各種不確定性。有個(gè)女病人,做了心臟手術(shù),還在康復(fù)期,父親問她:“你餓嗎?我給你弄點(diǎn)吃的,你想吃什么?”
My thoughts turned to my father. As medical students, Lucy and I had attended his hospital rounds in Kingman, watching as he brought comfort and levity to his patients. To one woman, who was recovering from a cardiac procedure: “Are you hungry? What can I get you to eat?”
“什么都行,”她說,“我餓死了?!?br>“Anything,” she said. “I’m starving.”
“嗯,那龍蝦和牛排怎么樣?”他拿起電話,給護(hù)士站打過去,“我的病人想吃龍蝦和牛排,現(xiàn)在,馬上!”他轉(zhuǎn)身看著她,面帶微笑,“在路上了。不過可能看起來像火雞三明治?!?br>“Well, how about lobster and steak?” He picked up the phone and called the nursing station. “My patient needs lobster and steak—right away!” Turning back to her, he said, with a smile: “It’s on the way, but it may look more like a turkey sandwich.”
他那么親切和藹地與病人交流,春風(fēng)化雨般在病人心中建立起信任,真是讓我備受啟發(fā)和鼓舞。
The easy human connections he formed, the trust he instilled in his patients, were an inspiration to me.
三十五歲的女病人坐在重癥監(jiān)護(hù)室的床上,臉上全是恐懼。妹妹快過生日了,她出去買禮物,突發(fā)癲癇。掃描之后發(fā)現(xiàn),她的右前額葉被一個(gè)良性的腦瘤壓迫。要說手術(shù)的風(fēng)險(xiǎn),這種腫瘤是風(fēng)險(xiǎn)最小的,長(zhǎng)的位置也很容易處理;做個(gè)手術(shù),她的癲癇癥狀就八九不離十地消除了。另一個(gè)選擇,就是終身服用有毒性的抗癲癇藥物。但我看得出來,光是“開顱手術(shù)”這幾個(gè)字就夠讓她心驚肉跳的了。她獨(dú)自一人,在一個(gè)陌生的地方,被迅速?gòu)氖煜?、熱鬧的購(gòu)物中心帶到外星球般的重癥監(jiān)護(hù)室,到處都是嗶嗶響的儀器和閃爍的警報(bào),還彌漫著一股消毒劑的味道。要是我用公事公辦的口吻,細(xì)數(shù)所有的風(fēng)險(xiǎn)和可能出現(xiàn)的并發(fā)癥,她很有可能就拒絕手術(shù)了。我當(dāng)然也可以把她的拒絕記下來,填在表上,想著我盡到了責(zé)任,完成了任務(wù),可以開始新的工作。我沒有這樣做,而是征得她的同意,把她的家人都召集到病床前,一起平心靜氣地討論各種選擇。隨著談話的深入,我看得出來,她那種不知所措的巨大恐慌,逐漸變成一個(gè)艱難但可以理解的決定。在我與她共處的當(dāng)下的空間里,她是個(gè)人,不是個(gè)亟待解決的問題。她選擇了手術(shù)。手術(shù)很順利。兩天后她回家了,癲癇再也沒有發(fā)作過。
A thirty-five-year-old sat in her ICU bed, a sheen of terror on her face. She had been shopping for her sister’s birthday when she’d had a seizure. A scan showed that a benign brain tumor was pressing on her right frontal lobe. In terms of operative risk, it was the best kind of tumor to have, and the best place to have it; surgery would almost certainly eliminate her seizures. The alternative was a lifetime on toxic antiseizure medications. But I could see that the idea of brain surgery terrified her, more than most. She was lonesome and in a strange place, having been swept out of the familiar hubbub of a shopping mall and into the alien beeps and alarms and antiseptic smells of an ICU. She would likely refuse surgery if I launched into a detached spiel detailing all the risks and possible complications. I could do so, document her refusal in the chart, consider my duty discharged, and move on to the next task. Instead, with her permis-sion, I gathered her family with her, and together we calmly talked through the options. As we talked, I could see the enormousness of the choice she faced dwindle into a difficult but understandable decision. I had met her in a space where she was a person, instead of a problem to be solved. She chose surgery. The operation went smoothly. She went home two days later, and never seized again.