人在临死前是如何沟通的?
How Do People Communicate Before Death?
2577字
2019-01-24 16:04
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火星译客

Mort Felix liked to say that his name, when read as two Latin words, meant “happy death.” When he was sick with the flu, he used to jokingly remind his wife, Susan, that he wanted Beethoven’s “Ode to Joy” played at his deathbed. But when his life’s end arrived at the age of 77, he lay in his study in his Berkeley, California, home, his body besieged by cancer and his consciousness cradled in morphine, uninterested in music and refusing food as he dwindled away over three weeks in 2012. “Enough,” he told Susan. “Thank you, and I love you, and enough.” When she came downstairs the next morning, she found Felix dead.

莫特·菲利克斯喜欢提起他的名字,说读起来就像两个拉丁单词,意思是“快乐的死亡”。当他患流感时,他常常玩笑似的提醒他的妻子苏珊,在他临终之时奏响贝多芬的《欢乐颂》。但在他在77岁去世时,也就是2012年,他浪费了三个星期的时间躺在加州伯克利家中的书房里,身体被癌症所困扰,意识被药物所包围,对音乐提不起兴趣,并且拒绝进食。“够了,”他告诉苏珊。“谢谢你,我爱你就足够了。”第二天早上她下楼时,发现菲利克斯已经死了。

During those three weeks, Felix had talked. He was a clinical psychologist who had also spent a lifetime writing poetry, and though his end-of-life speech often didn’t make sense, it seemed to draw from his attention to language. “There’s so much so in sorrow,” he said at one point. “Let me down from here,” he said at another. “I’ve lost my modality.” To the surprise of his family members, the lifelong atheist also began hallucinating angels and complaining about the crowded room—even though no one was there.

在这三个星期里,费利克斯一直在说话。他是一名临床心理学家,一生都在写诗,尽管他临终前的演讲常常毫无意义,但这似乎引起了他对语言的关注。他提到:“悲伤的事情太多了。”“让我从这儿下去,”他又说道。我已经失去了我的感受。令他的家人所惊讶的是,这位一生信奉无神论的人也开始产生了幻觉,并抱怨房间里太拥挤—尽管根本没有人。

Felix’s 53-year-old daughter, Lisa Smartt, kept track of his utterances, writing them down as she sat at his bedside in those final days. Smartt majored in linguistics at UC Berkeley in the 1980s and built a career teaching adults to read and write. Transcribing Felix’s ramblings was a sort of coping mechanism for her, she says. Something of a poet herself (as a child, she sold poems, three for a penny, like other children sold lemonade), she appreciated his unmoored syntax and surreal imagery. Smartt also wondered whether her notes had any scientific value, and eventually she wrote a book, Words on the Threshold, published in early 2017, about the linguistic patterns in 2,000 utterances from 181 dying people, including her father.

菲利克斯53岁的女儿丽莎·斯麦特一直在记录他说过的话,在他生命的最后几天里,她坐在他的床边把这些话记下来。上世纪80年代,斯马特在加州大学伯克利分校主修语言学,并以教成年人读写为职业。她说,对她来说,抄写费利克斯的漫谈是一种应对机制。她自己也算是个诗人(小时候,她卖诗,三首一便士,就像其他孩子卖柠檬水一样),她欣赏他无拘无束的语法和超现实主义的意境。Smartt也想知道她的笔记是否有科学价值,最后她写了一本书,叫《我的笔记》,该书于2017年初出版,讲述了包括她父亲在内的181位临终者的2000句话语中的语言模式。

阅读更多:了解你即将死去的感觉

Despite the limitations of this book, it’s unique—it’s the only published work I could find when I tried to satisfy my curiosity about how people really talk when they die. I knew about collections of “last words,” eloquent and enunciated, but these can’t literally show the linguistic abilities of the dying. It turns out that vanishingly few have ever examined these actual linguistic patterns, and to find any sort of rigor, one has to go back to 1921, to the work of the American anthropologist Arthur MacDonald.

尽管这本书有局限性,但它是独一无二的—当我试图满足自己关于人们临死时如何真正说话的好奇心时,它是我唯一能找到的出版作品。我知道有很多临终遗言很有说服力,也很清楚,但它们并不能从字面上显示出临终者的语言能力。事实证明,几乎没有人研究过这些实际的语言模式,要想找到某种严谨的语言模式,必须追溯到1921年,美国人类学家亚瑟·麦克唐纳(Arthur MacDonald)的著作。

To assess people’s “mental condition just before death,” MacDonald mined last-word anthologies, the only linguistic corpus then available, dividing people into 10 occupational categories (statesmen, philosophers, poets, etc.) and coding their last words as sarcastic, jocose, contented, and so forth. MacDonald found that military men had the “relatively highest number of requests, directions, or admonitions,” while philosophers (who included mathematicians and educators) had the most “questions, answers, and exclamations.” The religious and royalty used the most words to express contentment or discontentment, while the artists and scientists used the fewest.

为了评估人们“临死前的精神状态,”麦克唐纳挖掘了当时唯一可用的语言语料库——临终遗言选集,将人们分为10个职业类别(政治家、哲学家、诗人等),并将他们临终遗言编码为讽刺、诙谐、满足等。麦克唐纳发现,军人有相对最多的请求,指引,或警告,而哲学家(包括数学家和教育家)有最多的问题,答案,和感叹。宗教和皇室使用最多的词语来表达满意或不满意,而艺术家和科学家使用的最少。

MacDonald’s work “seems to be the only attempt to evaluate last words by quantifying them, and the results are curious,” wrote the German scholar Karl Guthke in his book Last Words, on Western culture’s long fascination with them. Mainly, MacDonald’s work shows that we need better data about verbal and nonverbal abilities at the end of life. One point that Guthke makes repeatedly is that last words, as anthologized in multiple languages since the 17th century, are artifacts of an era’s concerns and fascinations about death, not “historical facts of documentary status.” They can tell us little about a dying person’s actual ability to communicate.

“麦克唐纳的工作似乎是唯一的尝试,以量化评价最后一句话,结果是好奇的。”德国学者卡尔·古斯克在他的《临终遗言》一书中写道,该书论述了西方文化对临终遗言长期的着迷。麦克唐纳的研究主要表明,在生命的最后阶段,我们需要更好的关于语言和非语言能力的数据。古斯克反复强调的一点是,作为自17世纪以来以多种语言编撰的文集,《遗言》是一个时代对死亡关注和着迷的产物,而不是纪录片形式的历史事实。它们几乎不能告诉我们一个垂死之人的实际沟通能力。

Some contemporary approaches move beyond the oratorical monologues of yore and focus on emotions and relationships. Books such as Final Gifts, published in 1992 by the hospice nurses Maggie Callanan and Patricia Kelley, and Final Conversations, published in 2007 by Maureen Keeley, a Texas State University communications-studies scholar, and Julie Yingling, professor emerita at Humboldt State University, aim to sharpen the skills of the living for having important, meaningful conversations with the dying. Previous centuries’ focus on last words has ceded space to the contemporary focus on last conversations and even nonverbal interactions. “As the person gets weaker and sleepier, communication with others often becomes more subtle,” Callanan and Kelley write. “Even when people are too weak to speak, or have lost consciousness, they can hear; hearing is the last sense to fade.”

一些当代的研究方法超越了以往的雄辩独白,进一步关注于情感和关系。书籍《最后的礼物》于1992年由临终护理护士Maggie Callanan和Patricia Kelley出版,以及《最后的对话》于2007年由德克萨斯州立大学传播学研究学者莫林·基利(Maureen Keeley)和洪堡州立大学(Humboldt State University)名誉教授朱莉·英玲(Julie Yingling)共同发表,旨在提高生者的技能,以便与垂死的人进行重要而有意义的对话。在过去的几个世纪里,人们对临终遗言的关注已经转移到当代人们对临终遗言乃至非语言交流的关注。Callanan和Kelley写道,“随着人变得越来越虚弱和困倦,与他人的交流往往变得更加微妙。”“即使当人们虚弱得说不出话来,或失去知觉时,他们也能够听见;听觉是最不容易消失的感觉。”

I spoke to Maureen Keeley shortly after the death of George H. W. Bush, whose last words (“I love you, too,” he reportedly told his son, George W. Bush) were widely reported in the media, but she said they should properly be seen in the context of a conversation (“I love you,” the son had said first) as well as all the prior conversations with family members leading up to that point.

乔治·h·w·布什(George H. W. Bush)去世后不久,我与莫林·基利(Maureen Keeley)进行了交谈。据报道,他对儿子乔治·w·布什说:“我也爱你。”他的临终遗言“我也爱你”被媒体广泛报道,但她说,他们应该在交流(我爱你,儿子先说的)的背景下,恰当地去看待之前与家人的谈话。

At the end of life, Keeley says, the majority of interactions will be nonverbal as the body shuts down and the person lacks the physical strength, and often even the lung capacity, for long utterances. “People will whisper, and they’ll be brief, single words—that’s all they have energy for,” Keeley said. Medications limit communication. So does dry mouth and lack of dentures. She also noted that family members often take advantage of a patient’s comatose state to speak their piece, when the dying person cannot interrupt or object.

Keeley说,在生命最后之际,大部分的交流都是非语言的,因为人的身体会停止活动,而且通常缺乏长时间说话的体力,甚至是肺活量。基利说:“人们会轻声细语,内容简短、朴实无华,这就是他们的全部精力。”药物同样限制了交流。口腔干燥和缺少假牙也是如此。她还指出,当病人无法打断或反对时,家属往往会利用病人的昏迷状态来表达自己的观点。

阅读更多:思考死亡有什么好处?

Many people die in such silence, particularly if they have advanced dementia or Alzheimer’s that robbed them of language years earlier. For those who do speak, it seems their vernacular is often banal. From a doctor I heard that people often say, “Oh fuck, oh fuck.” Often it’s the names of wives, husbands, children. “A nurse from the hospice told me that the last words of dying men often resembled each other,” wrote Hajo Schumacher in a September essay in Der Spiegel. “Almost everyone is calling for ‘Mommy’ or ‘Mama’ with the last breath.”

许多人就这样在沉默中死去,特别是患有老年痴呆症或几年前就丧失语言能力的老年痴呆症患者。对那些说英语的人来说,他们的方言似乎常常很迂腐。从一个医生那里,我听说人们经常说,“哦操,哦操。”通常后面是妻子,丈夫,孩子的名字。《明镜周刊》(Der Spiegel) 9月刊登的一篇文章中,哈乔舒马赫(Hajo Schumacher)写道,“临终关怀中心的一名护士告诉我,临终者的临终遗言常常很相似。”“几乎每个人最后一口气都在呼唤妈妈。”

It’s still the interactions that fascinate me, partly because their subtle interpersonal textures are lost when they’re written down. A linguist friend of mine, sitting with his dying grandmother, spoke her name. Her eyes opened, she looked at him, and died. What that plain description omits is how he paused when he described the sequence to me, and how his eyes quivered.

这些互动仍然让我着迷,部分原因是当它们被记录下来时,微妙的人际关系就消失了。我的一个语言学家朋友,和他垂死的祖母坐在一起,呼叫她的名字。她睁开眼睛,与他对视之后死去。这段平淡无奇的描述遗漏了他在向我描述这个过程时停顿的方式,以及他的眼睛是如何颤抖的。

But there are no descriptions of the basics of last words or last interactions in the scientific literature. The most linguistic detail exists about delirium, which involves a loss of consciousness, the inability to find words, restlessness, and a withdrawal from social interaction. Delirium strikes people of all ages after surgery and is also common at the end of life, a frequent sign of dehydration and over-sedation. Delirium is so frequent then, wrote the New Zealand psychiatrist Sandy McLeod, that “it may even be regarded as exceptional for patients to remain mentally clear throughout the final stages of malignant illness.” About half of people who recover from postoperative delirium recall the disorienting, fearful experience. In a Swedish study, one patient recalled that “I certainly was somewhat tired after the operation and everything … and I did not know where I was. I thought it became like misty, in some way … the outlines were sort of fuzzy.” How many people are in a similar state as they approach death? We can only guess.

但是在科学文献中并没有关于最后一句话或最后一次互动的基本描述。在语言上,关于谵妄存在的细节最多,包括失去意识、无法找到词语、坐立不安以及从社会交往中退缩。所有年龄段的人在手术后都会出现谵妄,在生命末期也很常见,这是脱水和镇静过度的常见症状。新西兰精神病学家桑迪·麦克劳德(Sandy McLeod)写道,当时精神错乱是如此的频繁,以至于病人在恶性疾病的最后阶段保持头脑清醒甚至可能被视为异常情况。从术后谵妄中恢复过来的人中,大约有一半的人回忆起了令人迷惑和恐惧的经历。在瑞典的一项研究中,一名患者回忆说,手术后我确实有点累了,我不知道自己身在何处。我觉得世界模糊了,在某种程度上是轮廓有点模糊。有多少人在接近死亡时处于类似的状态?我们只能猜测。

We have a rich picture of the beginnings of language, thanks to decades of scientific research with children, infants, and even babies in the womb. But if you wanted to know how language ends in the dying, there’s next to nothing to look up, only firsthand knowledge gained painfully.

由于数十年来对儿童、婴儿甚至子宫内婴儿的科学研究,我们对语言的起源有了丰富的了解。但如果你想知道语言是如何终结的,几乎没有什么可查的,只能费力去获得第一手知识。

After her father died, Lisa Smartt was left with endless questions about what she had heard him say, and she approached graduate schools, proposing to study last words academically. After being rebuffed, she began interviewing family members and medical staff on her own. That led her to collaborate with Raymond Moody Jr., the Virginia-born psychiatrist best known for his work on “near-death experiences” in a 1975 best-selling book, Life After Life. He has long been interested in what he calls “peri-mortal nonsense” and helped Smartt with the work that became Words on the Threshold, based on her father’s utterances as well as ones she’d collected via a website she called the Final Words Project.

父亲去世后,丽莎·斯麦特(Lisa Smartt)对父亲说过的话充满了无尽的疑问,于是她找到了一些医药科学院,提议对临终遗言进行学术研究。在遭到拒绝后,她开始自己采访家人和医务人员。这促使她与弗吉尼亚出生的精神病学家小雷蒙德穆迪(Raymond Moody Jr.)合作。小雷蒙德穆迪最著名的作品是1975年出版的畅销书《后人生》(Life After Life),书中描述了濒死的体验。长期以来,他一直对他所谓的“临终废话”感兴趣,并帮助斯玛特完成了《门槛上的文字》(Words on the Threshold)的创作。这部作品是根据斯玛特父亲的话语,以及她通过一个名为“最后的文字项目”(the Final Words Project)的网站收集到的。

One common pattern she noted was that when her father, Felix, used pronouns such as it and this, they didn’t clearly refer to anything. One time he said, “I want to pull these down to earth somehow … I really don’t know … no more earth binding.” What did these refer to? His sense of his body in space seemed to be shifting. “I got to go down there. I have to go down,” he said, even though there was nothing below him.

她注意到的一个常见模式是,当她的父亲菲利克斯(Felix)使用it和this等代词时,它们并没有明确指代任何东西。有一次他说,我想把这些东西拉到地上,不知怎么搞的,我真的不知道再也没有泥土的束缚了。这些是指什么?他的身体在空中的感觉似乎在改变。我得去那里。“我得下去,”他说,“尽管下面什么也没有。”

He also repeated words and phrases, often ones that made no sense. “The green dimension! The green dimension!” (Repetition is common in the speech of people with dementia and also those who are delirious.) Smartt found that repetitions often expressed themes such as gratitude and resistance to death. But there were also unexpected motifs, such as circles, numbers, and motion. “I’ve got to get off, get off! Off of this life,” Felix had said.

他还会重复一些毫无意义的单词和短语。绿色的尺寸!绿色的尺寸!(重复在痴呆症患者和精神错乱患者的讲话中很常见。)Smartt发现,重复的动作往往表达了诸如感恩和抵抗死亡等主题。但也有一些意想不到的主题,如圆形、数字和运动。“我得下车,下车!结束这一生。”费利克斯说过。

Smartt says she’s been most surprised by narratives in people’s speech that seem to unfold, piecemeal, over days. Early on, one man talked about a train stuck at a station, then days later referred to the repaired train, and then weeks later to how the train was moving northward.

斯玛特说,她最惊讶的是人们在演讲中讲述的故事,这些故事似乎在几天的时间里一点一点地展开。一开始,有个人提到一列火车停在一个车站,几天后又提到修好的火车,几周后又提到火车是如何向北行驶的。

“If you just walk through the room and you heard your loved one talk about ‘Oh, there’s a boxing champion standing by my bed,’ that just sounds like some kind of hallucination,” Smartt says. “But if you see over time that that person has been talking about the boxing champion and having him wearing that, or doing this, you think, Wow, there’s this narrative going on.” She imagines that tracking these story lines could be clinically useful, particularly as the stories moved toward resolution, which might reflect a person’s sense of the impending end.

斯玛特说:“如果你走进房间,听到你的爱人说‘哦,我的床边站着一位拳击冠军’,那听起来就像是一种幻觉。”“但是如果你一直看到那个人在谈论拳击冠军,让他戴着那个,或者做这个,你会想,哇,这是一个故事。”她认为追踪这些故事线索在临床上是有用的,尤其是当故事走向解决的时候,这可能反映了一个人即将结束的感觉。

In Final Gifts, the hospice nurses Callanan and Kelley note that “the dying often use the metaphor of travel to alert those around them that it is time for them to die.” They quote a 17-year-old, dying of cancer, distraught because she can’t find the map. “If I could find the map, I could go home! Where’s the map? I want to go home!” Smartt noted such journey metaphors as well, though she writes that dying people seem to get more metaphorical in general. (However, people with dementia and Alzheimer’s have difficulty understanding figurative language, and anthropologists who study dying in other cultures told me that journey metaphors aren’t prevalent everywhere.)

在《最后的礼物》一书中,临终关怀医院的护士Callanan和Kelley指出,濒死的人经常用旅行的比喻来提醒身边的人,是时候离开人世了。他们举例一个17岁的女孩,死于癌症,因为找不到地图而心烦意乱。“如果我能找到地图,我就可以回家了!地图在哪里?我想回家!”Smartt也注意到了这种旅程的隐喻,尽管她写道,一般来说,濒死的人似乎变得更加隐喻。(然而,患有痴呆症和阿尔茨海默氏症的人很难理解比喻性语言,研究其他文化中死亡的人类学家告诉我,旅行比喻并非随处可见。)

Even basic descriptions of language at the end of life would not only advance linguistic understanding but also provide a host of benefits to those who work with the dying, and to the dying themselves. Experts told me that a more detailed road map of changes could help counter people’s fear of death and provide them with some sense of control. It could also offer insight into how to communicate better with the dying. Differences in cultural metaphors could be included in training for hospice nurses who may not share the same cultural frame as their patients.

即使是对生命末期语言的基本描述,也不仅会促进语言的理解,而且还会给那些与垂死的人一起工作的人,以及垂死的人自己带来许多好处。专家告诉我,一个更详细的变化路线图可以帮助人们克服对死亡的恐惧,给他们一些控制感。它还可以为如何更好地与临终者沟通提供见解。文化隐喻的差异可以被纳入到对可能与患者文化框架不同的临终关怀护士的培训中。

End-of-life communication will only become more relevant as life lengthens and deaths happen more frequently in institutions. Most people in developed countries won’t die as quickly and abruptly as their ancestors did. Thanks to medical advances and preventive care, a majority of people will likely die from either some sort of cancer, some sort of organ disease (foremost being cardiovascular disease), or simply advanced age. Those deaths will often be long and slow, and will likely take place in hospitals, hospices, or nursing homes overseen by teams of medical experts. And people can participate in decisions about their care only while they are able to communicate. More knowledge about how language ends and how the dying communicate would give patients more agency for a longer period of time.

随着寿命的延长和机构中死亡事件的增多,临终沟通只会变得更加重要。发达国家的大多数人不会像他们的祖先那样突然且迅速地死去。由于医学的进步和预防保健,大多数人可能会死于某种癌症、某种器官疾病(主要是心血管疾病),或者仅仅是死于高龄。这些死亡通常是漫长而缓慢的,很可能发生在由医疗专家小组监督的医院、收容所或养老院。人们只有在能够交流的情况下,才能参与有关他们的护理的决定。更多的关于语言如何结束以及垂死的人如何交流的知识,将在更长的时间内给予病人更多的能动性。

But studying language and interaction at the end of life remains a challenge, because of cultural taboos about death and ethical concerns about having scientists at a dying person’s bedside. Experts also pointed out to me that each death is unique, which presents a variability that science has difficulty grappling with.

但是,研究临终时的语言和互动仍然是一项挑战,因为人们对死亡有文化禁忌,而且临终病人旁边坐着科学家也是不符合道德的。专家们还向我指出,每一次死亡都是独一无二的,这呈现出科学难以应对的多样性。

And in the health-care realm, the priorities are defined by doctors. “I think that work that is more squarely focused on describing communication patterns and behaviors is much harder to get funded because agencies like NCI prioritize research that directly reduces suffering from cancer, such as interventions to improve palliative-care communication,” says Wen-ying Sylvia Chou, a program director in the Behavioral Research Program at the National Cancer Institute of the National Institutes of Health, who oversees funding on patient-doctor communication at the end of life.

在卫生保健领域,由医生确定优先事项。“我认为直接集中于描述沟通模式和行为的工作更难获得资助,因为像NCI这样的机构会优先考虑直接减少癌症发病率的研究,如干预提高疗养沟通,”周Wen-ying西尔维亚说道。他是美国国立卫生研究院国家癌症研究所(National Cancer Institute of the National Institutes of Health)行为研究项目的一名项目主任,负责监督临终医患沟通方面的资金投入。

Despite the faults of Smartt’s book (it doesn’t control for things such as medication, for one thing, and it’s colored by an interest in the afterlife), it takes a big step toward building a corpus of data and looking for patterns. This is the same first step that child-language studies took in its early days. That field didn’t take off until natural historians of the 19th century, most notably Charles Darwin, began writing down things their children said and did. (In 1877, Darwin published a biographical sketch about his son, William, noting his first word: mum.) Such “diary studies,” as they were called, eventually led to a more systematic approach, and early child-language research has itself moved away from solely studying first words.

尽管Smartt的书有缺陷(它不能控制药物,一方面,它被对来世的兴趣所影响),但它在构建数据库和寻找模式方面迈出了一大步。这是儿童语言研究早期迈出的第一步。直到19世纪的自然历史学家,最著名的是查尔斯·达尔文,开始记录他们的孩子说的和做的事情,这个领域才开始腾飞。(1877年,达尔文发表了一篇关于他儿子威廉姆(William)的传记小品,其中提到了他的第一个词:妈妈。)这种被称为日记的研究,最终导致了一种更系统的方法,早期的儿童语言研究本身已经从单纯研究第一个单词转向了研究。

“Famous last words” are the cornerstone of a romantic vision of death—one that falsely promises a final burst of lucidity and meaning before a person passes. “The process of dying is still very profound, but it’s a very different kind of profoundness,” says Bob Parker, the chief compliance officer of the home health agency Intrepid USA. “Last words—it doesn’t happen like the movies. That’s not how patients die.” We are beginning to understand that final interactions, if they happen at all, will look and sound very different.

“著名的临终遗言”是浪漫死亡观的基石,它错误地表示,在一个人去世之前,他的生命会有最后一次清醒和意义的迸发。美国家庭健康机构Intrepid USA的首席合规官鲍勃·帕克(Bob Parker)说,“死亡的过程仍然非常深刻,但它是一种非常不同的过程。”“这可不像电影里演的那样。病人不是这样死的。”我们开始理解最终的互动,如果它们真的发生了,将会看起来和听起来非常不同。

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