读书笔记：关于衰老和死亡（上）

原书及其作者：这本书是挺久之前流行的了，很久之前进入我的书单，更久之后才整理出笔记，前后简直拖延的可怕。作者 Atul Gawande 是出生在美国的移民二代，父母都来自印度。他在美国受教育并成为医生，但是仍然和远在印度本土的大家族保持着联结。他也是相当成功的畅销书作家，这本书就是一个例证。讲述他对于美国医疗系统如何处理时日无多的绝症患者的反思——说的更直白一点，社会和医疗系统如何对待死亡。

这个话题值得每个成年人都想一想，当死亡的前奏已经在某人身上响起，告别无可避免的时候，我们和我们的社会是怎么做的？我之前是因为担心这个话题会被写的很做作所以才读的很拖沓，现在读完了，可以担保这个问题完全不存在。作者从一个非常有力的思考社会问题的角度来反思医疗系统的弊病。

此外，这本书的阅读体验非常良好，相当成功而典型的畅销之作。每章的结构有头有尾，有小标题，有前后勾连。也像畅销书一样有很多有趣的故事和个人案例。倒不是说学术书籍没有这些，只不过学术书籍里这些东西的方式要围绕着内容而设置有时候俨起来是真不顾阅读体验的死活。

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Being Mortal: Medicine and What Matters in the End

Chp 1 The Independent Self

• 现代科技和医学大幅延长了人的寿命，变老的意义发生了改变，人们应对老年阶段的方式也发生了改变。以往，老人往往是一个族群内经验和智慧的载体，但是现在很多时候，我们咨询年轻人来了解新技术。以往，对老人的赡养和照顾，在许多文化中都是由多个代际共同承担的，但总有一些子女要牺牲更多的个人精力来照顾老人；而在现代文化中养老更多的变成了一种私人事务。
• 人们寿命延长的一个结果是，成年子女和老年父母的相处时间变得更长，财产继承和看护问题不可避免的变得复杂。已成年子女和父母的分居成为常态，而且在很多时候对于双方都成为一种解脱。

We think, nostalgically, that we want the kind of old age my grandfather had. But the reason we do not have it is that, in the end, we do not actually want it. (p.p. 20)

p20 The fascinating thing is that, over time, it doesn’t seem that the elderly have been especially sorry to see the children go. Historians find that the elderly of the industrial era did not suffer economically and were not unhappy to be left on their own.

p21-22 Choices for the elderly have proliferated. Del Webb, an Arizona real estate developer, popularized the term “retirement community” in 1960 …… He believed people in the last phase of their lives didn’t want to live the way my grandfather did, with the family underfoot. …… For those who had no interest in moving into such places—Alice Hobson, for instance—it became acceptable and feasible to remain in their own homes, living as they wanted to live, autonomously.

Chp 2 Things Fall Apart

• 新的常规存在一个问题，我们如今推崇的是独立且自由的老年生活，但沿着现代人漫长的衰老轨迹前行，我们最终总是会失去独立生活的能力，而且会在需要周密看护的阶段里生活很多年。现代的文化和媒体宣传，多少仍是把这种生命最后的窘境当成某种尴尬和不自然的境况，导致家庭、老人、为数不少的医生，都没有真正的认识和思考过不可避免的死亡和生命终局到底意味着什么。
• 但其实最不自然的是当前人类的长寿本身。对于自然界的许多动植物，包括现代以前的人类，在寿命极限前死去才是常见的。生命的延长是不自然的，而在延长过程中的脆弱，倒不如说是这种延长的必然后果。
• 现代医学并不像它自以为的那样无所不能，我们取得了一些相对以往水平而言的进步，但在很多时候也只是延长了生命的最终阶段——甚至很多时候，是痛苦而恢复无望的勉强延长——还很贵。衰老仍然是不可避免、无药可医的。现代医学的发展有时候反而让我们忘了这一点。

Indeed, for most of history, death was a risk at every age of life and had no obvious connection with aging, at all. (p.p. 32)

p22-23,28 Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained?

p27-28 There is always some final proximate cause that gets written down on the death certificate—respiratory failure, cardiac arrest. But in truth no single disease leads to the end; the culprit is just the accumulated crumbling of one’s bodily systems while medicine carries out its maintenance measures and patch jobs.

This is normal. Although the processes can be slowed—diet and physical activity can make a difference—they cannot be stopped. (p.p. 31)

• 一些干货比较多的新畅销书往往会包含学界的最新研究方向，虽然涵盖范围不一定公允、解读不一定客观，而且先锋研究领域本身就包含大量未解之谜和不确定性。比方说这本书提到，人类为什么会衰老、衰老的本质是什么？经典的解释是环境中的随机消耗所致，新兴的学说认为是我们的基因编码所决定。目前的证据总体而言还是更支持经典解释，但这两种说法目前还是难分胜负。
• 衰老无法被任何一个单一的过程所描述，它是所有的系统都逐渐衰退，人自身生理系统中的备份单元全都用尽之后，最终我们会来到无法再承受任何一点小滋扰的状态。这个过程中的很多症状是外显的，包括一系列写的太清楚都有点可怕的老年表征。

p31-33 Why we age is the subject of vigorous debate. The classical view is that aging happens because of random wear and tear. The newest view holds that aging is more orderly and genetically programmed. Proponents of this view point out that animals of similar species and exposure to wear and tear have markedly different life spans. …… These findings notwithstanding, the preponderance of the evidence is against the idea that our life spans are programmed into us. …… Leonid Gavrilov, a researcher at the University of Chicago, argues that human beings fail the way all complex systems fail: randomly and gradually. As engineers have long recognized, simple devices typically do not age. They function reliably until a critical component fails, and the whole thing dies in an instant. A windup toy, for example, works smoothly until a gear rusts or a spring breaks, and then it doesn’t work at all.

• 现在有很多畅谈不老神话的畅销书，导致社会对于真实的老年生活反而缺乏了解。除了在个人和家庭的尺度上让我们对这个时代的老年生活样貌无所准备之外，这种避谈也在阻止社会针对人口年龄图景的变化而做出适应。人口寿命的延长将会导致全世界的老年人口比重增大，这个以往看不见的人群会变得越来越多而且存在的越来越久。
• 医学和社会保障行业，也远未对这一趋势做好充分准备。切实在这一段结局注定的路程中设法提高老年人口生活质量的医学门类（geriatrics），赔钱、缺人、保险公司不保。这个学科的运作方式就没有任何能让人兴奋和炒作的点，花费巨大而且效果是通过统计研究才能看出来，细水长流，并没有什么耀眼的神话可书写。
• 要解释清楚老年医学的意义，首先要解释现行的医学逻辑意味着什么。现代医学的目标更多的是注重解决具体疾病，然后默认病人出了院就会自然回到美好生活。但是这个年代中的衰老，在医学的干预下变成了长而缓慢的下行，解决各个单一的问题变得越来越没有意义——因为这在很多时候反而意味着更大的干预，老年的身体却有可能再也无法从一场手术中恢复了，一些过度干预是在为了让病人“活下去”而剥夺老年生活的自主性和尊严。相比之下，老年医学的核心逻辑则在于，自主、有尊严、心理状态不抑郁的度过这段无可挽回的下行之路，才是真正值得追求的晚景。

It’s a strange double standard. No one insists that a $25,000 pacemaker or a coronary-artery stent save money for insurers. It just has to maybe do people some good. (p.p. 45)

p41 The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world. Most doctors treat disease and figure that the rest will take care of itself. And if it doesn’t—if a patient is becoming infirm and heading toward a nursing home—well, that isn’t really a medical problem, is it? …… To a geriatrician, though, it is a medical problem. People can’t stop the aging of their bodies and minds, but there are ways to make it more manageable and to avert at least some of the worst effects.

p44 Several years ago, researchers at the University of Minnesota identified 568 men and women over the age of seventy …… Within eighteen months, ro percent of the patients in both groups had died. But the patients who had seen a geriatrics team were a quarter less likely to become disabled and half as likely to develop depression. They were 40 percent less likely to require home health services.

• 老年生活质量最需要的是什么？这一章没有直接给出集中的答案，但是全书贯穿了很多老年人的故事，我大致的总结是：感到自己仍可以掌握自己的生活，感到自己的存在仍然对社会或者什么人是有意义的（养宠物，打理花园，带小孩，甚至是照顾其他的同居老人），处于熟悉的环境中保持熟悉的人际联结，被周围人真实的对待（认识到疾病和衰老的存在、不可挽回，但仍然看作是活生生的、需求和想法应该被尊重的人，而不仅仅是“病人”）。

Chp 3 Dependence

• 在整个20世纪中，医学产生了翻天覆地的进步，医院从等死的地方变成期待康复的地方。社会福利和养老金体系（在富裕国家）逐渐建立了，老年生活的最后阶段从各方面条件一塌糊涂的 poorhouse 转到监管逐渐完善的 nursing home 里。现代人平均在这些提供全方位照护的机构里度过半年左右，但是这些机构比起关心老年人的生活水平，更多的只是关心一些易于量化的医疗目标。
• 这最后的半年是人几乎彻底失去独立生活能力的日子，无微不至的照护是需要的，但是现代医疗逻辑下以治愈为目的的设施并未能在提供看护的同时满足人们在走进坟墓之前的最后一点生活需求。当人老去，像青壮年一样足以独立掌控生活的 “健康” 状况就永远不会再回来了。现代的医院希望他们“痊愈”，但这注定不会发生了。于是使人“痊愈”这一服务于恢复、提振生活质量的手段本身变成了目的，而目的本身被丢到了深深的无意识之中。

p70 The reason old people wound up in poorhouses, it turned out, was not just that they didn’t have money to pay for a home. They were there because they’d become too frail, sick, feeble, senile, or broken down to take care of themselves anymore, and they had nowhere else to turn for help. Pensions provided a way of allowing the elderly to manage independently as long as possible in their retirement years. But pensions hadn’t provided a plan for that final, infirm stage of mortal life.

This has been the persistent pattern of how modern society has dealt with old age. The systems we’ve devised were almost always designed to solve some other problem. (p.p. 71)

p73 The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book Asylums. They were, along with military training camps, orphanages, and mental hospitals, “total institutions”—places largely cut off from wider society.

p75 Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends. …… Nursing homes have come a long way from the firetrap warehouses of neglect they used to be. But it seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.

The things she missed most, she told me, were her friendships, privacy, and a purpose to her days. (p.p. 75)

Chp 4 Assistance

• 从这一章开始，极大比重的笔墨被用于描写个案。虽然前面也有很多个案描写，但还是对现有框架的概括描述居多。这之后就开始用大量的案例剖析来佐证自己的理论。
• 对老人的长期照料是一个在物质和心理层面都非常耗人的工作，除了24小时高度响应、高度警惕之外，还会有无穷无尽的健康问题需要处理，再加上有时候人情世故和金钱贡献方面的纠纷，长期压力非常恐怖。

p79 …… we find it hard to believe that anything better is possible for when we are so weakened and frail that managing without help is no longer feasible. We haven’t had the imagination for it.

p83 Cohabitation required adjustment. Everyone soon discovered the reasons that generations prefer living apart. Parent and child traded roles, and Lou didn’t like not being the master of his home. He also found himself lonelier than he expected.

p85-86 Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. Lou was on numerous medications, which had to be tracked and sorted and refilled. He had a small platoon of specialists he had to visit—at times, nearly weekly—and they were forever scheduling laboratory tests, imaging studies, and visits to other specialists. He had an electronic alert system for falls, which had to be tested monthly. And there was almost no help for Shelley. The burdens for today’s caregiver have actually increased from what they would have been a century ago.

• 这就是 assisted living 的概念介入的地方，这种设施的最初理念是尽量让处于脆弱状态中的老人尽可能掌握自己的生活，包括房间可上锁、自己决定自己的日程、允许独立照料宠物之类。在这些问题上，保证老人安全的追求和尊重老人意愿的追求有所冲突，尊重和以尊重为名的疏忽也难以界定。

p88-89 In the imaginary place, she would be able to lock her door, control her heat, and have her own furniture. No one would make her get up, turn off her favorite soaps, or ruin her clothes. Nor could anyone throw out her “collection” of back issues and magazines and Goodwill treasures because they were a safety hazard. She could have privacy whenever she wanted, and no one could make her get dressed, take her medicine, or go to activities she did not like. …… let frail elderly people maintain as much control over their care as possible, instead of having to let their care control them.

p91 The services were, in most ways, identical to the services that nursing homes provide. But here the care providers understood they were entering someone else’s home, and that changed the power relations fundamentally. The residents had control over the schedule, the ground rules, the risks they did and didn’t want to take.

p92 In 1988, the findings were made public. They revealed that the residents had not in fact traded their health for freedom. Their satisfaction with their lives increased, and at the same time their health was maintained. Their physical and cognitive functioning actually improved. Incidence of major depression fell. And the cost for those on government support was 20 percent lower than it would have been in a nursing home.

• assisted living 概念背后的基础意识，是对在人生命的最后阶段，到底什么最重要的认识。书里提到一项现有结论，人在生活中的关注范围会随着预期寿命的减少而窄化（举个典型例子，年轻时喜欢认识新朋友，随着年纪增长更喜欢和已有的亲朋好友度过时光），变得更关注当下和最亲近者的体验。潜台词是，如果动大手术、忍受各种并发症、花钱花时间所做的是通过当前的痛苦来换取可能的未来康复（或者有限的增加寿命），那这对于本来就没多少剩余寿命的人来说到底有什么意义？
• 感觉这里几段话可以结合另一本 “Thinking, fast and slow” 里的一个观点来看，人会放大小但不为零的可能性，同时会低估高但不为百分百的可能性。具体而言，1%的可能性在人眼里的价值远远大于1/100分，人们愿意花大价钱搏一搏；但是99%的价值要远远低于99/100分，人们也会愿意为了消弭那1%的不确定来花上大价。很多人选择坚持治疗，保持乐观，是希望万一自己就是那个不世出的奇迹案例呢？这本书里提供了医护行业的视角：这些期待会压倒性多数的落空，甚至有些从一开始就是被不相关案例误导出的错误预期。
• 由于 assisted living 理念自身的复杂和模糊之处，相关设施在这个概念诞生之初的很长时间里存在大量的良莠不齐、挂羊头卖狗肉之类问题。“改善主观生活体验”这个理念本身也严重缺乏衡量和监管指标。此外，这种程度的“自由”，本身也给决策者和受益者带来了更多责任压力，更好的选择变得可能，意味着决策的复杂度又上一层楼。

“I love it when assisted living works,” she said. It’s just that in most places it doesn’t. (p.p. 103)

p97 When horizons are measured in decades, which might as well be infinity to human beings, you most desire all that stuff at the top of Maslow’s pyramid—achievement, creativity, and other attributes of “self-actualization.” But as your horizons contract—when you see the future ahead of you as finite and uncertain—your focus shifts to the here and now, to everyday pleasures and the people closest to you.

p100 This simple but profound service—to grasp a fading man’s need for everyday comforts, for companionship, for help achieving his modest aims—is the thing that is still so devastatingly lacking more than a century later.

“We want autonomy for ourselves and safety for those we love.” That remains the main problem and paradox for the frail. (p.p. 106)

Chp 5 A Better Life

• 接下来这一章就是花大量篇幅来描述在人极端脆弱和不能自理的阶段中，更好的生活也是可能的。只是需要挑战以往的行业观念：长照机构的第一目的应该是从外部角度保证住户的安全和医疗指标，还是应该襄助这些人最大限度的过自己想要的、认为值得过的生活？
• 这个问题模板是真的很经典了，我感觉我在好多地方都看到，抽象一下不就是：该做我们认为是为对方好的，还是该做对方自己想要的？同一个模板的变种包括但不限于：父母应该（在多大程度和什么时候上）约束子女去走自己认为好的道路还是让子女探索自己的道路？民选议员应该（在多大程度和什么时候上）做民意的提线木偶还是发挥自己的判断？等等。
• 这一章抛出的另一个潜在理念，我感觉我可以通过另一本八竿子打不着的书来示意。以下引文出自道格拉斯（Frederick Douglass）的一本自传，他是一位曾经身为奴隶的废奴运动思想家和活动家。这段话的前后文是他第一次反抗他当时的奴隶主 Covey 之后的发展。

  “My Dondage and My Freedom”, p172-173 I had reached the point, at which I was not afraid to die. This spirit made me a freeman in fact, while I remained a slave in form. When a slave cannot be flogged he is more than half free. He has a domain as broad as his own manly heart to defend, and he is really ‘a power on earth.’ While slaves prefer their lives, with flogging, to instant death, they will always find christians enough, like unto Covey, to accommodate that preference.

• 我觉得这段话中可以抽象出的理念是，有时候我们对一件事抓得太紧，反而会无法得到全局问题的最优解。经典例子比如说，对钱财看得太吝啬，不停地攒钱却从来没有享受过；上面这段话就像是这个模板的逆否命题，特别愿意委曲求全的人，就会有吃不完的委屈。同理回到原书，我觉得之一章抛出的另一个潜在理念就是，“有时候我们不去死死执着于，哪怕在软性生活品质上做出很多牺牲也要也要保住那些硬性的医疗指标（比如预期寿命，体重，血糖血脂…），反而能得到更好的临终体验”。更好的主观生活体验甚至能在实际上减少机构成本的情况下提升住户的整体医疗表现。

p123 Researchers studied the effects of this program over two years, comparing a variety of measures for Chase’s residents with those of residents at another nursing home nearby. Their study found that the number of prescriptions required per resident fell to half that of the control nursing home. Psychotropic drugs for agitation, like Haldol, decreased in particular. The total drug costs fell to just 38 percent of the comparison facility. Deaths fell 15 percent.

p128 The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all.

Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does. (p.p. 137)

p127 In more recent times, psychologists have used the term “transcendence” for a version of this idea. Above the level of self-actualization in Maslow’s hierarchy of needs, they suggest the existence in people of a transcendent desire to see and help other beings achieve their potential. …… Yet while we may feel less ambitious, we also become concerned for our legacy. And we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile.

p140 There are different concepts of autonomy. One is autonomy as free action—living completely independently, free of coercion and limitation. …… The late, great philosopher Ronald Dworkin recognized that there is a second, more compelling sense of autonomy. Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human.

• 但是因为这种更开放的理念，风险也是的确有所增加的，虽然讨论力度轻一点但这本书并没有乐观到完全忽视这些方面。比方说，一个人因为肌肉萎缩或者随便什么问题而难以自主行走、很容易摔倒，但是他很珍视自由行走的机会——那么，把他绑在轮椅上是更传统的选择，允许他自己走路就一定意味着他有时候可能会在没人发现的地方意外摔倒。

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原书信息：Gawande, Atul. 2014. Being Mortal: Medicine and What Matters in the End. Toronto, Ontario: Anchor Canada.