A Protocol for Dying

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原文地址：http://hintjens.com/blog:115

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References

• 臨終協定

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状态：准备翻译 / 阅读中 / 归档中

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启动日期：2021 / 01 / 04 截止日期：2021 / 01 / 31

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Time for my last article (as it turns out, not really). I could probably write more, yet there are times for everything and after this, my attention will be focused on the most comfortable position for my bed, the schedule for pain killers, and the people around me.

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是时候，写我的最后一篇文章了（然而事实并非如此）。我本可以写更多的，但每一件事情都它的时间，而在这之后，在床上最舒适的地方，我的注意将集中在止痛药的时间表和我身边的人。

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Yesterday I had twelve visitors, including my lovely young children. You'd think it's exhausting, yet the non-stop flow of friends and family was like being in a luxurious hot bath with an infinite supply of fresh water.

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昨天，我有 12 个访客，包括我可爱的孩子们。你可能想这会令人疲倦，然而，不断往来的朋友和家人们就像有着无限供应的热水的豪华浴室。

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I was a disconnected and lonely young man. Somewhat autistic, perhaps. I thought only of work, swimming, my pet cats, work. The notion that people could enjoy my company was alien to me. At least my work, I felt, had value. We wrote code generators in Cobol. I wrote a code editor that staff loved because it worked elegantly and ran on everything. I taught myself C and 8086 assembler and wrote shareware tools. The 1990's slowly happened.

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年轻的时候，我曾是一个孤僻的人，有点内向。心里只有工作、游泳、和我的猫。对于和他人在一起会感到快乐这种想法感到奇怪。不过，我的工作我感受是有价值的。我们使用 Cobol 写了一个代码生成器。我写的编辑器在公司非常受欢迎，因为它运行的非常好，而且能在我们所有的系统上执行。我还自学了 C 和 8086 汇编，和写了几个共享软件。这些都在 1990 年慢慢的发生着。

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Over time I learned that if you chat with a stranger, in the course of any kind of interaction (like buying a hot dog, or groceries) they'll chat back with a beam of pleasure. Slowly, like a creeping addiction to coffee, this became my drug of choice.

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久而久之我发现和陌生交流，任何形式的互动过程（如买热狗或者杂货的时候）对方都会愉快的回应。慢慢的，就像喝咖啡上瘾一样，这也成为我的药瘾。

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In time it became the basis, and then the goal of my work: to go to strange places and meet new people. I love the conferences because you don't need an excuse. Everyone there wants, and expects, to talk. I rarely talk about technical issues. Read the code, if you want that.

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慢慢地它成为了日常，也成为了我工作的目标：到一个陌生的地方遇见不同的人。我喜欢参加研讨会，因为在那找人说话不需要什么借口，每个人都喜欢而且想要讨论。在哪，我不怎么讨论技术问题。如果你想要讨论这些的话，去读代码吧。

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And so I'm proud of my real work, which has been for decades, to talk with people, listen and exchange knowledge, and then synthesize this and share it on with others. Thousands of conversations across Europe, America, Africa, Asia. I'll take whatever credit people want to give me for being creative, brilliant, etc. Yet the models and theories I've shaped and documented are consistently drawn from real-life experience with other people.

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因为这样，这数十年来我非常自豪我的实际工作就是和人交流，听他们讲什么，和交换知识，然后综合起来再分享给其他人。我总计在欧洲、美洲、亚洲做了上千场交流。我乐于接受人们说我有创意、聪明等等的赞誉。其实那些我曾参与打造和撰写的模型或者理论，一直都是来自生活中与他人的互动。

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Thank you, my friends, for that. When I say "I love you" it's not some gesture. You literally kept me fed, professionally and intellectually.

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谢谢你们，我的朋友们，因为你们才有这些。当我说“我爱你们”的时候是有言外之意的。可以说你们一直在专业和知识上灌溉着我。

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So I wanted to document one last model, which is how to die, given some upfront knowledge and time. I'm not going to write an RFC this time. :)

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所以，我想要写下这个最后的模型，这次是关于如何面对死亡，我会付出一点时间来大家讲述一下显而易见的知识。这次我写的不是RFC 。

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How it Happened

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事情是怎么发生的

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Technically, I have metastasis of bile duct cancer, in both lungs. Since February I've had this dry cough, and been increasingly tired and unfocused on work. In March my Father died and we rushed around arranging that. My cough took a back seat. On April 8 I went to my oncologist to say that I was really not well. She organized a rush CAT scan and blood tests.

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从技术上说，我所患的胆管癌已经扩散到两个肺部了。自二月份开始，我便已经开始干咳，而且日渐疲惫，无法将注意力集中在工作上。三月份，我的父亲过世之后，我们一直在忙于处理他的后事时。我的咳嗽便一直不断了。在四月八号的时候，我和我的肿瘤科医生说我感觉不舒服。 她为我准备了一次紧急的 CAT 扫描和抽血检验。

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On 13 April, a horrific bronchoscopy and biopsies. On 15 April, a PET scan. On 16 April I was meant to drive to Eindhoven to keynote at NextBuild. Instead I went to the emergency room with explosive pains in my side, where they'd done the biopsies. I was checked in and put on antibiotics, which fixed the pain, and on 18 April my oncologist confirmed it was cancer. I'm still here, and my doctors are thinking what chemo to try on me. It is an exotic cancer in Europe with little solid data.

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在四月十三号的时候，进行了一次可怕的支气管镜和活检。在四月十五号的时候，进行了一次 PET 扫描。在四月十六号的时候，我本来打算开车到 Eindhoven 去 NextBuild 进行演讲的，但事实是，我因为一侧的剧痛去了急诊室，并在那进行了一次活检。同时，打了抗生素之后，疼痛才得到了缓解。在四月十八号时候，我的肿瘤科医生告知了我这是癌症。我必须留在医院，以便于我的医生考虑如何进行治疗。由于我所罹患的病在欧洲的案例不多，只有为数不多的具体资料。

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What we do know is that cholangiocarcinoma does not respond well to chemotherapy. Further, that my cancer is aggressive and fast moving. Third, I've already some clusters in other parts of my body. All this is clear and solid data.

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我们所知道的是胆管癌对化疗反应不佳。 再者，我的癌症具有侵略性而且扩散的非常迅速。 第三则是我的身体其他部位已经出现了一些转移。 所有这些都是清晰而可见的数据。

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So that day I told the world about it, and prepared to die.

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因此，那我向世界公开了这件事情，并准备好迎接即将到来的死亡。

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Talking to a Dying Person

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和临终之人聊天

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It can be horribly awkward to talk to a dying person (let's say "Bob"). Here are the main things the other person (let's say "Alice") should not say to Bob:

• "Hang in there! You must have hope, you must fight!" It's safe to assume that Bob is fighting as hard as possible. And if not, that's entirely Bob's choice.

• "This is so tragic, I'm so sad, please don't die!" Which my daughter said to me one time. I explained softly that you cannot argue with facts. Death is not an opinion. Being angry or sad at facts is a waste of time.

• "You can beat this! You never know!" Which is Alice expressing her hope. False hope is not a medicine. A good chemotherapy drug, or a relaxing painkiller, that's medicine.

• "There's this alternative cure people are talking about," Which gets the ban hammer from me, and happily I only got a few of those. Even if there was a miracle cure, the cost and stress (to others) of seeking it is such a selfish and disproportionate act. With, as we know, lottery-style chances of success. We live, we die.

• "Read this chapter in the Bible, it'll help you." Which is both rude and offensive, as well as being clumsy and arrogant. If Bob wants religious advice he'll speak to his priest. And if not, just do not go there. It's another ban hammer offense.

• Engage in slow questioning. This is passive-predatory, asking Bob to respond over and over to small, silly things like "did I wake you?" Bob is unlikely to be a mood for idle chitchat. He either wants people close to him, physically, or interesting stuff (see below).

Above all, do not call and then cry on the phone. If you feel weepy, cut the phone, wait ten minutes, then call back. Tears are fine, yet for Bob, the threat of self-pity looms darker than anything. I've learned to master my emotions yet most Bobs will be vulnerable.

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和临终的人说话是痛苦的，我们暂且称他为 Bob 吧，其他人就称为 Alice。下面是 Alice 不应该和 Bob 说的事情：

• “坚持住！你必须心怀希望，你必须击败它！” 可以肯定的是，Bob 已经尽可能努力地在和病魔抗争了。如果不是，那也是 Bob 的选择。

• “这是如此的痛苦，我好难过，你不能死！”我的女儿曾对我说这样的话。我当时和她讲述这是无法改变的现实。死亡是不允许我们选择的。对事实生气或是难过都是在浪费时间。

• “你一定可以打败它！不试试怎么知道”，这是 Alice 在表达她的期望。错误的期望不是治疗。有效的化疗药剂或是解痛剂，那才是治疗。

• “传闻有些实验性病人被治好了”，这句话让我想拿锤子，还好和我这种话的人不多。即使有奇迹般的治疗，寻求它的代价和压力（对其他人来说）也是如此自私和不成比例的行为。就如果同我们所知的，彩票中奖的概率之低。生而为人，生死有命。

• “读一下圣经的这个章节吧，这对你有帮助”这种讲法即鲁莽又失礼，再加上愚蠢和傲慢。如果 Bob 需要信仰帮忙的话，他自己回去找牧师。如果没，就是他不想去。这句话会让我拿锤子。

• 小心翼翼的询问，是一种消极性的骚扰。让 Bob 一而再再而三会带这些细微、无聊的蠢问题，如“我把你吵醒了吗”，Bob 可能会缺乏心情回答这些无意义的瞎扯。他更想要人们亲近他，身体上的，或者和他讲述一些有趣的事情。

还有，不要打电话给他然后在电话里哭。如果你感觉快要哭了，先挂断电话，等十分钟之后在重新打回去。流泪是对的，但对于 Bob 来说感受到自己的悲哀会让他陷入到更深的痛苦中。我已经知道如何去控制自己的情绪，但 Bob 的心理还是脆弱的。

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Here are the things that Alice can talk about that will make Bob happy:

• Stories of old adventures they had together. Remember that time? Oh boy, yes I do… it was awesome!

• Clinical details. Bob, stuck in his bed, is probably obsessed by the rituals of care, the staff, the medicines, and above all, his disease. I'll come to Bob's duty to share, in a second.

• Helping Bob with technical details. Sorting out a life is complex and needs many hands and minds.

• "I bought your book," assuming Bob is an author like me. It may be flattery, or sincere, either way it'll make Bob smile.

Above all, express no emotions except happiness, and don't give Bob new things to deal with.

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以下是 Alice 可以和 Bob 交流时，令他感到快乐的事情：

• 曾经一起经过的一些往事。还记得那时候吗？喔，是的，我 ...... 有趣！

• 诊疗的细节。Bob 现在困在病床上， 他经历着林林总总满是仪式的疗程，和医护人员，药物等等，以及他所罹患的疾病。我会立即去倾听 Bob 对此的分享。

• 帮助 Bob 处理一些技术上的问题。要让生活井然有序也许非常麻烦，需要人出手帮助和心力照顾。

• 如果 Bob 像我一样是个作家的话，可以和他说“我买了你的书”一类的话。不管是奉承还是真心的，这都能让 Bob 会心一笑。

还有，除了快乐之外的其他情绪不必表露出来。记住，不要让 Bob 忧心其他新的事情。

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Bob's Duties

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Bob 的责任

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It's not all Alice's work. Bob too has obligations under this protocol. They are, at least:

• Be happy. This may sound trite yet it's essential. If you are going to be gloomy and depressed, Alice will be miserable every time she talks to you.

• Obviously, put your affairs in order. I've been expecting death for years now, so had been making myself disposable wherever I could. For family, that is not possible. For work, yes, and over the years I've removed myself as a critical actor from the ZeroMQ community.

• Remove all stress and cost that you can. For example Belgium permits euthanasia. I've already asked my doctors to prepare for that. (Not yet!, when it's time…) I've asked people to come say goodbye before I die, not after. No funeral. I'll give my remains to the university here, if they want them.

• Be realistic. Hope is not medicine, as I explained. If you are going to negotiate with your doctors, let it be pragmatic and in everyone's interests. I've told mine they can try whatever experimental chemotherapy they wish to. It's data for them, and the least I can do for a system that's given me five+ years of extra life.

• Assume the brutal worst. When my oncologist saw my scan she immediately called me and told me, in her opinion, it was cancer. In both lungs, all over the place. I put the phone down, and told the children. The next day I told their schools to expect the worst, then my lawyer, then my notary. Ten days later the biopsies confirmed it. That gave us ten more days of grieving and time to prepare.

• Be honest and transparent with others. It takes time to grieve and it is far easier to process Bob's death when you can talk about it with Bob. There is no shame in dying, it is not a failure.

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这不仅仅是 Alice 的事情，Bob 也有责任遵守这个协议。至少需要注意以下事项：

• 乐观。这也许听起床有点迂腐但是非常重要。如果你郁郁寡欢，Alice 每次与你交谈时都会感到痛苦。

• 显然，你也必须把自己的事情处理好。哪怕已经来日无多，也应该尽力让自己变得可有可无。但在家庭上，这是不可能的。但是在工作上，是可以的，所以这几年我已经尽量让自己从活跃的 ZeroMQ 社区中抽离出来。

• 尽可能的降低自己的压力和不必要的开销。例如，比利时允许安乐死。我已经告诉我的医生为此而准备。（不是现在！时间到的时候...）我会告知人们在我活的时候来道别，而不是我逝去之后。不必丧葬，我准备将我的遗体交给这里的大学，如果他们想要的话。

• 认清现实。愿望不该是治愈，我解释过为何。如果你打算和你的医生协商，那么讨论些实际性的。我已经告诉我的医生，他们可以尝试在我身上实验任何化疗的药物。这可以让他们获取想要的数据， 这是我对于这个让我拥有了额外五年生命的系统的一点贡献。

• 作最坏的打算。当我的肿瘤科医生一看到我的片子的时候，她便立即打电话给我并告诉我，在她看来，这是癌症。两边的肺部都可见癌症扩散。我放下电话，并告诉孩子们，隔天，我把最坏的情况告诉了孩子们的学习，接着是我的律师，公证人。十天之后，病理切片检验确认是癌症。这十天让我有时间来准备，也让我自己有时间替自己感到悲伤。

• 坦诚和透明的面对他人。其他人需要有时间去悲伤，如果他们能在 Bob 还能说话的时候和他讨论，那么处理 Bob 的后事会更简单一点。 这不是什么难以启齿的事情，死亡并不是失败。

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Explaining to the Children

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和孩子们解释

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My kids are twelve, nine, five. Tragic, etc. etc. Growing up without a father. It is a fact. They will grow up with me in their DNA, on Youtube as endless conference talks, and in writing.

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关键词/句

• Tragic ：悲剧

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孩子们现在的年纪分别是 12 岁、9岁、5岁。悲剧 ..... 他们将在缺乏父亲的陪伴下长大。但这是事实。

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I've explained it to them slowly, and many times over the years, like this. One day, I will be gone. It may be long away, it may be soon. We all die, yes, even you little Gregor. It is part of life.

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这几年我已经慢慢地和他们解释了无数次。终有一天，我会离开，或早或晚。我们都会死。是的，Gregor，你也是的。这是生命的一部分。

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Imagine you have a box of Lego, and you build a house, and you keep it. And you keep making new houses, and never breaking the old ones. What happens? "The box gets empty, Daddy." Good, yes. And can you make new houses then? "No, not really." So we're like a Lego houses, and when we die our pieces get broken up and put back in the box. We die, and new babies can be born. It is the wheel of life.

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Gregor 想象你有一盒乐高玩具，你拼了一栋房子，留着它，然后你需要继续建新的房子，而旧的房子不拆掉的话，那会发生什么呢？“盒子会变成空的，Daddy ”，是的，对的。那你能继续建新的房子吗？“不，不行”。所以我们就像乐高的房子一样，当我们逝去以后会分解掉，就像积木一样重新回到盒子中。我们的死亡，和新的生命将可以出生。这是生命的轮回。

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But mostly I think seeing their parent happy and relaxed (not due to pain killers), and saying goodbye over weeks feels right. I am so grateful not to have died suddenly. I'm so grateful I won't lose my mind.

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不过，我想他们更多的是看到自己的父亲快乐和轻松（这不是因为止痛剂的缘故），好几个礼拜都蛮正常的在和他们说再见。我非常感恩没突然间离去，和没有像植物人那要失去心智。

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And I've taught my children, to swim and bike and skate and shoot. To cook, to travel and to camp. To use technology without fear. At three, Gregor was on Minecraft, keyboard in left hand, mouse in right. At seven, Noemie learned to shoot a pistol. They speak several languages. They are confident and quick learners, like their dad.

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而且我已经告诉我的孩子要学会游泳、骑单车、溜冰和射击。要学会煮东西、要去旅行和露营。要学会使用科技而不是害怕。Gregor 在三岁就在玩 Minecraft ，左手键盘，右手鼠标。Noemie 在七岁的时候就学会了使用手枪射击。他们会讲好几种语言。他们有自信而且学的快，和他们的父亲一样。

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And everyone needs to learn what it means to die. It is a core part of being a full human, the embrace of one's mortality. We fight to live, of course. And when it's over, we embrace the end. I'm happy that I can teach this lesson to my children, it is one that I never had.

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每个人都应该认识死亡的意义。这是成为一个完整的个体的核心之一，接纳自己的死亡的事实。担任，我们要为活着而奋斗，然后担任它成为过去的时候，我们就拥抱这个终点吧。我非常高兴将这些教授给我的孩子们，这些过往从未有人告知过我。

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Euthanasia

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安乐死

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I am, finally, so glad I never quit Belgium. This country allows for death on demand, for patients who are terminal or have a bad enough quality of life. It takes three doctors and a psychiatrist, in the second case, and four weeks' waiting period. In the first case, it takes one doctor's opinion.

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我应该庆幸我最后没有离开比利时。这个国家允许临终或者已经痛苦不堪的病人自己选择结束生命。后者需要经过三个医生和一个精神科医生的评估，以及四个星期的缓冲期。 而前者，这需要一个医生的评估意见。

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My dad chose this, and died on Easter Tuesday. Several of us his family were with him. It is a simple and peaceful process. One injection sent him to sleep, into a coma. The second stopped his heart. It was a good way to die, and though I didn't know I was sick then, one I already wanted.

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我的父亲便是选择安乐死的，选择了在复活节那天离开。 那时家人一起陪着他度过了一个简单而平静的过程。第一剂注射让他进入了昏睡状态。第二剂注射则让他的心脏停止了跳动。当时我曾认为这是一种不错的死亡方式，虽然我不曾想过我也将以这种方式离开。

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I'm shocked that in 2016 few countries allow this, and enforce the barbaric torture of decay and failure. It's especially relevant for cancer, which is a primary cause of death. Find a moment in your own jurisdiction, if it bans euthanasia, to lobby for the right to die in dignity.

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令我感慨的是哪怕已经是 2016 年了，也只有为数不多的国家允许这样做，并且强制要在无效抢救之后。安乐死和癌症有着一种特别的关系，因为癌症是主要的死因之一。如果你所在的地方的代表不支持这样的话，请游说一下他，自主选择失望是一件值得尊重的事情。

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My Feelings on All This

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我对于整件事情的感觉

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I've never been a fearful person. My last brush with death left me so casual about the whole concept of professional and social risk that I became the predatory character Allen Ding so nicely describes. That calmed down after our Game of Thrones project ended. It was never really me, just the person I became to make things work, in that place and time.

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我从来不是一个怕事的人。和死亡擦肩而过，让我能淡然的面对它在事业和社会上产生的风险，并成为了类似 Allen Ding 这样的掠夺者的性格。也让我们能够在 《权力的游戏 Game of Thrones》结束之后，慢慢地平静下来。那从来都不是真正的我，只是恰巧此时此刻，在这里我成为了推动事情进行的人。

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Having had years to prepare for this, and having seen a great many delicate plans come together over those years, leaves me deeply satisfied. Since 2011 I've become an expert pistol shot, taught myself to play piano (and composed many small pieces), seen my children grow into happy, bubbling characters, written three books, coached the ZeroMQ community into serene self-reliability. What more can a Bob ask for?

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数年的时间让自己准备好了面对这一切，也亲眼目睹了数个精心策划的项目一起推进的情形，这些都让我可以心满意足的离开了。从 2011 年开始，我成为一名手枪射击的专家，并自学了钢琴（还自编了数段小曲），亲眼看着自己的孩子们成长为一个具有乐观、朝气蓬勃的人，也写了三本书，还指导 ZeroMQ 社区具有稳重可靠的特质。像这样，Bob 还能要求什么呢？

[LinkXSystem]

The staff here are lovely. I've no complaints, only gratitude to all my friends for the years of pleasure you've given me, my drug, which kept me alive and driven.

Thank you! :)

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这里的医护人员非常亲切，我没有什么可以抱怨的，只有感恩朋友们这些年你们带给我的欢乐，也感谢那些让我维持生命和活力的药物。

[LinkXSystem]

Think of the Children

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想一下孩子们

[LinkXSystem]

Please use this article to add your stories. If you have them elsewhere, or you emailed me, copy/paste as a comment. Feel free to write in Dutch or French if that's your language. I'd really like a single place where my kids can come and read what other people say about their dad.

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请在这篇文章中写下你的故事。如果你把故事写在别的地方或者你曾邮件过给我的话，请复制/粘贴在文章的评论下面。你想要写荷兰语或是法语的话，如果那是你使用的语言。 我想让孩子们可以从一个地方知道他们的父亲在别人的口中是怎样的人。

[LinkXSystem]

Many people have asked my PayPal address ph@imatix.com, to send a donation for my children.

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那些想给我的孩子们捐款的人们在问我的 PayPal 地址是：ph@imatix.com