《10到25岁》第一章(1):花费巨大但效果堪忧甚至反转的干预年轻人的两个项目

说明:我正在连载《10到25岁》这本书的原文和翻译。本文是第一章的第1篇。到目前为止,原文的结构

Terrie’s Deathbed 特丽临终之际

This hospital room in Winston-Salem, North Carolina, was normally reserved for patients on end-of-life care, but on September 8, 2013, it was used as a makeshift video-production studio. The U.S. Centers for Disease Control and Prevention (CDC) had come to record the parting advice of a woman, Terrie Hall, who would die of cancer two days later. In 2000, Terrie Hall found a small sore on the inside of her cheek. A biopsy showed that it was a tumor, and further testing showed the cancer had already spread from her mouth to her throat. Over the next thirteen years Terrie would undergo radiation therapy, chemotherapy, and surgeries that would remove parts of her jaw and her larynx (voice box), leaving her in need of an electronic prosthetic larynx to speak. She used this raw, wheezing, synthetic voice to share her final lessons with the CDC and the world.

2013年9月8日,北卡罗来纳州温斯顿-塞勒姆的这间医院病房通常是为临终关怀患者预留的,但那天却被临时用作视频制作工作室。美国疾病控制与预防中心(CDC)前来录制一位名叫特丽·霍尔的女士的临终忠告,她将在两天后因癌症去世。2000年,特丽·霍尔在她脸颊内侧发现了一个小溃疡。活检显示这是一个肿瘤,进一步的检查显示癌症已经从她的口腔扩散到喉咙。在接下来的十三年里,特丽接受了放射治疗、化疗和手术,手术切除了她的部分下颌和喉部(声带),使她需要依靠电子假声带说话。她用这种粗糙、喘息的合成声音与CDC和全世界分享她最后的教训。

Terrie developed cancer because she was addicted to cigarettes. Like 90 percent of adult smokers, she became hooked before she was eighteen. “I had my first cigarette at age thirteen, and age seventeen is when I really started being a regular smoker,” she said. In 1964, the U.S. Office of the Surgeon General had released a blockbuster report titled Smoking and Health, which informed the world that smoking was, globally, the leading cause of cancer and cancer-related deaths. It was a lost battle for the tobacco companies, but they were winning the war. They had invested millions in making smoking look cool. There was the Marlboro Man—a rugged cowboy who tamed the wild terrain, always with a cigarette in hand—and Joe Camel—a classy, “smooth character” who lived the high life surrounded by beautiful women and a cloud of smoke. When the government said that smoking was dangerous, it may have helped the tobacco companies’ situation. It showed teenagers that smoking was a way to be rebellious and win the admiration of their peers.

特丽患癌是因为她吸烟成瘾。像90%的成年烟民一样,她在十八岁之前就上了瘾。“我十三岁时抽了第一支烟,十七岁时才开始真正成为常吸烟的人,”她说。1964年,美国外科医生办公室发布了一份重磅报告《吸烟与健康》,向全世界宣告吸烟是全球癌症和癌症相关死亡的主要原因。这对烟草公司来说是一个失败的战役,但他们却在整个战争中获胜。他们投入了数百万美元让吸烟看起来很酷。有万宝路男人:一个驯服荒野的粗犷牛仔,手里总是夹着一支烟;还有 乔·骆驼:一个优雅和光鲜的角色,过着高端生活,周围环绕着美女和烟雾。当政府说吸烟“危险”时,这可能反而帮了烟草公司的忙。它向青少年表明,吸烟是一种叛逆的方式,可以赢得同龄人的钦佩。

As a junior at Forbush High School in 1977, Terrie was a popular cheerleader, constantly invited to parties. Her friends smoked, and she wanted to be with them, so she started smoking too. “It was the cool thing to do,” she told the CDC. Soon she was smoking two packs a day, every day, for decades, until her larynx was surgically removed. On her deathbed, she said, “My fear now is that I won’t be around to see my grandchildren graduate or get married.” And she lamented that “this [raspy synthetic voice] is the only voice my grandson knows. I miss being able to sing lullabies to him.” But Terrie was also full of purpose. She wanted the future to be different. She hoped, she prayed, that the CDC or anyone else listening might come up with a better way to prevent young people from ending up like her.

1977年,作为福布什高中的一名高二学生,特丽是一个受欢迎的啦啦队队长,经常受邀参加派对。她的朋友们都抽烟,她也想和他们在一起,所以也开始抽烟。“这是当时很酷的事情,”她告诉CDC。很快,她每天抽两包烟,持续了几十年,直到她的喉部被手术切除。在临终之际,她说:“我现在担心的是,我无法看到我的孙子们毕业或结婚。”她哀叹道:“这是我孙子唯一知道的声音。我怀念能给他唱摇篮曲的日子。”但特丽也充满了使命感。她希望未来有所不同。她希望,她祈祷,CDC或任何其他听众能想出一个更好的办法,防止年轻人像她一样。

In 1998, after a landmark legal decision against the tobacco industry, the tobacco companies were pressured by the federal government to launch anti-smoking advertisements on television, in newspapers and magazines, on billboards, and on the radio. Suddenly, the same advertising agencies that had made millions coming up with ways to get teens to smoke were charged with doing the opposite. One campaign’s tagline said, “Think. Don’t smoke.” Another tagline said, “Tobacco is whacko if you’re a teen.” Everyone expected that the more teens saw these ads, the less likely they would be to smoke. But that’s not what they found. When a rigorous independent study evaluated the tobacco companies’ campaigns, they found that “Think. Don’t smoke” and “Tobacco is whacko” caused young people to be more likely to think that smoking was cool and rebellious, to think more favorably of the tobacco companies, and to trust the companies more to look after their health. The anti-smoking campaigns also made teens more likely to try smoking. Public health experts were baflled, and the tobacco companies continued making money.

1998年,在对烟草行业的一项里程碑式的法律判决之后,烟草公司迫于联邦政府的压力,在电视、报纸和杂志、广告牌和广播上推出了反吸烟广告。突然间,那些曾通过让青少年吸烟而赚得盆满钵满的广告公司,现在被要求做相反的事情。一个广告活动的口号是:“思考。不要吸烟。”另一个口号是:“如果你是青少年,吸烟就是疯子。”每个人都期望青少年看到这些广告越多,他们就越不可能吸烟。但结果并非如此。当一项严谨的独立研究评估了烟草公司的广告活动时,他们发现“思考。不要吸烟”和“吸烟是疯子”导致年轻人更可能认为吸烟很酷、很叛逆,对烟草公司的看法更加正面,更信任烟草公司,相信他们会顾虑他们的健康。反吸烟广告还让青少年更可能尝试吸烟。公共卫生专家感到困惑,而烟草公司继续赚钱。

Anti-tobacco programs aren’t the only efforts that flop. Did you know that the most common effect of anti-obesity programs for young people is weight gain compared to those who didn’t get a program? And did you know that antibullying programs for late middle school and high school students tend to increase bullying? As a society, we want to target those age groups to prevent extreme events like suicide or school violence, but the most common programs either backfire or prove useless.

反烟草项目并不是唯一反转的努力。你是否知道,与未参与的人相比,反肥胖项目的对年轻人最常见的效果是增重?你是否知道,针对初中和高中生的反欺凌项目往往会增加欺凌行为?作为一个社会,我们希望干预这些年龄段,防止自杀或校园暴力等极端事件,但最常见的项目要么适得其反,要么毫无用处。

If we want to help the millions of people like Terrie who suffer for decades due to preventable choices made by their younger selves, then we need to confront our society’s inability to understand and influence young people. The overwhelming failure of so many of our society’s youth-serving programs should be a sign that we need to look more deeply at our fundamental mental models about young people. We owe it to young people to ask the hard question: What if the problem has more to do with us—and how we treat the next generation—-than it has to do with who they are?

如果我们想帮助像特丽的数百万人(他们因年轻时可预防的选择而痛苦数十年)那么我们需要正视我们社会无法理解和影响年轻人的问题。我们社会中如此多服务于年轻人的项目的压倒性失败应该是一个信号,表明我们需要更深入地审视关于年轻人的基本心理模型。我们欠年轻人的是需要回答如下疑问:导致上述问题的原因是不是更多来自我们(和我们如何对待下一代的方式)而与他们是谁无关?

Taking Your Pills 服药问题

Dr. Steven Alexander has been a professor of pediatrics for decades at Stanford University’s number-one-ranked youth kidney transplant center in the United States. When I met him not long ago, he told me about a fascinating set of challenges his nephrology clinic was facing.

斯蒂文·亚历山大博士在斯坦福大学美国排名第一的青少年肾脏移植中心担任儿科教授已有数十年。不久前我见到他时,他向我讲述了他的肾脏科诊所面临的一系列有趣挑战。

Like all medical professionals involved in kidney transplants, Dr. Alexander is a merchant of happiness and freedom. The kidneys filter out the toxins in your body that you normally excrete through urination. When kidneys lose their function, you need to use a dialysis machine to filter those fluids instead. You endure this agonizing treatment three times per week, for three and a half hours per day. The day before dialysis you’re puffy and short of breath because your body cavities are filled with waste liquids. On the day of dialysis, you suffer the pain of having gallons of waste drained out of you. When Alexander’s clinic gets you a kidney transplant, you’re finally freed from the chains of the dialysis machine, capable at last of living a mostly normal life.

像所有参与肾脏移植的医疗专业人员一样,亚历山大博士能卖给你幸福和自由。肾脏过滤掉你体内通常通过尿液排出的毒素。当肾脏失去功能时,你需要使用透析机来过滤这些液体。你每周忍受三次这种痛苦的治疗,每次三个半小时。透析前一天,你会因为体腔内充满废液而浮肿、气短。透析当天,你要忍受数加仑废液被排出的痛苦。当亚历山大博士的诊所为你找到一个肾脏时,你终于从透析机的枷锁中解脱出来,终于能够过上基本正常的生活。

When Dr. Alexander started in nephrology in 1976, the transplant procedure was still new. Children and adolescents rarely kept their transplanted kidneys for very long. Back then, fewer than 30 percent of children lived for three years or longer. Now the survival rate after three years is closer to 95 percent. The medical profession has spent billions developing new surgical techniques and medications, they have created a vast infrastructure to keep organs viable long enough to make it to a recipient, and they have trained world-class surgeons. The most important discovery of all was highly effective drugs to prevent the body from rejecting the transplanted kidney. These drugs, called immunosuppressants, stop the immune system’s attacks on a new kidney that came from someone else’s body. The miracle of taking an organ out of one person and sewing it into the body of a child in need has now become routine.

当亚历山大博士在1976年开始从事肾脏科工作时,移植手术还相对较新。儿童和青少年很少能长期保留移植的肾脏。那时,不到30%的儿童能活过三年。现在,三年后的存活率接近95%。医学界投入了数十亿美元开发新的手术技术和药物,他们建立了一个庞大的基础设施来保持器官在移植到受者体内之前的活力,并培训了世界一流的外科医生。最重要的发现是高效药物,可以防止身体排斥移植的肾脏。这些药物称为免疫抑制剂,可以阻止免疫系统对来自另一个人身体的新肾脏的攻击。将一个器官从一个人体内取出并缝合到需要它的孩子体内的奇迹,现在已经成为常规操作。

And yet, every year, scores of Dr. Alexander’s patients lose transplanted kidneys when they shouldn’t. The reason why is simple to diagnose but hard to solve: doctors can’t get ten-to-twenty-five-year-old patients to take their immunosuppressant pills regularly.

然而,每年都有许多亚历山大博士的患者在不该失去移植肾脏的情况下失去了它们。原因简单明了,但难以解决:医生无法让10至25岁的患者定期服用他们的免疫抑制剂。

“I think I’m so clear, as clear as can be, and then two weeks later, they’re taking their pills completely wrong,” one exasperated doctor told me.

“我认为我已经说得很清楚了,非常清楚,然后两周后,他们完全错误地服用药物,”一位沮丧的医生告诉我。

“Surgeons would have a record of one hundred percent kidney survival if they could get the young people to take their meds,” Alexander told me. Indeed, a study of every transplant in the United States to date showed that kidney rejection is almost at zero for children under ten years old because their parents make them take their pills. But every year from age ten to seventeen, when young people seize more freedom and autonomy, rejection rates inch up. The rates stay high until age twenty-five, when they start going back down dramatically. Thus, ten to twenty-five are the problem years.

“如果外科医生能让年轻人按时服药,他们的肾脏存活率将达到100%,”亚历山大告诉我。事实上,一项针对美国所有移植手术的研究显示,10岁以下儿童的肾脏排异率几乎为零,因为他们的父母会让他们服药。但从10岁到17岁,当年轻人获得更多自由和自主权时,排异率逐渐上升。排异率一直居高不下,直到25岁才开始大幅下降。因此,10到25岁是问题年龄。

Here’s a story I once heard from a nurse at Stanford’s pediatric nephrology clinic. She called parents of patients whose blood tests indicated problems. The nurse would say, “Your son’s blood tests say there is zero medication in his bloodstream, and he’s having symptoms. Are you sure he’s taking his medications?” She would hear the mom ask her son, “You’re taking your pills, right?” followed by a loud and obnoxious “Of course, Mom!” from the son. The nurse would calmly explain that it’s biologically impossible for the patient to show no trace of the medicine in his blood if he’s taking it, unless he has a rare disorder that perfectly and completely metabolizes the medicine before it works. In either scenario, the patient would need to come into the clinic immediately for further testing. After a long pause, the nurse would hear the mother come back on and say, “Okay, he told me he’s not taking the meds. He’ll start. Thanks for calling.”

我曾在斯坦福大学儿科肾脏科诊所听护士讲过一个故事。她会打电话给那些血液检测显示有问题的患者的父母。护士会说:“你儿子的血液检测显示他体内没有药物,而且他有症状。你确定他在服药吗?”她会听到妈妈问儿子:“你在服药,对吧?”然后儿子大声且讨厌地回答:“当然,妈妈!”护士会平静地解释说,如果患者确实在服药,那么他血液中不可能没有药物的痕迹,除非他有一种罕见的疾病,能完美且完全地在药物起作用前代谢掉药物。在任何一种情况下,患者都需要立即到诊所进行进一步检测。经过一段长时间的停顿后,护士会听到妈妈回来说:“好吧,他告诉我他没有服药。他会开始的。谢谢你的电话。”

Parents may be compassionate, but kidneys are not. Without the immunosuppressant, the body starts to reject the kidney within a day. “Kidney transplants are unforgiving. You absolutely must take immunosuppression every day,” Alexander explained to me. After a few days the transplanted kidney is rejected by the body. The young person goes back on dialysis for years—or forever. This isn’t just Dr. Alexander’s problem. In fact, 35 to 45 percent of all adolescents and young adults who receive transplants—kidneys, livers, hearts, stem cells—don’t take their pills as prescribed. And this problem hasn’t gotten better over time, despite improved surgical techniques and medication. A prominent physician recently reviewed the entire history of pediatric kidney transplants and reached a dismal conclusion: “We appear to be no closer to solving the problem of nonadherence than we were forty years ago… It remains a critical and often unsurmountable detriment” to transplant survival. When it comes to changing the behavior of young people during the critical window of ten to twenty-five, medicine has not delivered results. What’s going on?

父母可能是慈悲的,但肾脏却不是。没有免疫抑制剂,身体会在一天内开始排斥肾脏。“肾脏移植的服药错误不可饶恕。你绝对必须每天服用免疫抑制剂,”亚历山大向我解释道。几天后,移植的肾脏就会被身体完全拒绝。年轻人又要回到透析机上,可能几年——甚至永远。这不仅仅是亚历山大博士的问题。事实上,35%到45%的接受移植的青少年和年轻成人——肾脏、肝脏、心脏、干细胞——没有按处方服药。而且这个问题并没有随着时间的推移而改善,尽管手术技术和药物有所改进。一位著名医生最近回顾了整个儿科肾脏移植的历史,得出了一个令人沮丧的结论:“我们在解决排异问题方面似乎并不比四十年前更好……它仍然是一个关键且常常无法克服的障碍”(关于移植存活率)。在改变10至25岁年轻人行为的关键窗口期,医学并没有带来结果。到底是怎么回事?

One clue comes from deeper reflection on the flaws in the “Think. Don’t smoke” and “Tobacco is whacko” anti-smoking campaigns. Both campaigns tell youth what to do (i.e., “Don’t smoke” is a command). That’s potentially a poor fit with how adolescents want to feel at a neurobiological level. Likewise, transplant- education sessions involve telling, telling, telling. Doctors, nurses, and pharmacists hold three separate conversations with young patients and their parents. The authority figures describe the consequences of not taking the immunosuppressant pills and make the young person repeat everything back to them, like a comprehension quiz. It’s the young person’s job to listen and obey.

一个线索来自对“思考。不要吸烟”和“烟草是疯狂”反吸烟广告活动缺陷的深入反思。这两个活动都告诉年轻人该做什么(即,“不要吸烟”是一个命令)。这在神经生物学层面上可能与青少年想要的感觉不匹配。同样,移植教育会议也涉及告诉、告诉、告诉。医生、护士和药剂师分别与年轻患者及其父母进行三次对话。权威人士描述了不服用免疫抑制剂药物的后果,并让年轻人复述一切,就像一个理解力测验。年轻人的工作是倾听和服从。

“You don’t get educated on how to talk to adolescents,” one experienced doctor told me. “Doctors are trained to communicate scientific information, not pay attention to what’s stopping humans from acting on the information. So everything we say comes across as a threat, like, 'If you don’t do this, then I’m going to have to increase your meds.” Indeed, one transplant recipient gave a keynote to doctors and nurses at a professional conference. “The doctors tried many fear tactics on me,” he said. “It didn’t work.” He lost his first kidney and was by then on his second.

“你不会学到如何与青少年交谈,”一位有经验的医生告诉我。“医生被训练传达科学信息,而不是关注是什么阻止了人们根据信息行动。所以我们的每一句话都像是一种威胁,比如,‘如果你不这样做,那么我将不得不增加你的药物。’”的确,一位移植接受者在一次专业会议上对医生和护士发表了主旨演讲。“医生对我尝试了许多恐吓手段,”他说。“这没有用。”他失去了第一个肾脏,那时已经在用第二个了。

The limited scope of this conversation could come across as disrespectful to young people because it fails to seriously address how the medication will affect the patients. “I hated the pills. I didn’t seem to take my pills seriously,” one transplant recipient said. “People don’t realize how hard it is to take your medication twice a day,” another patient told me.

这种有限范围的对话可能对年轻人显得不尊重,因为它没有认真对待药物将如何影响患者。“我讨厌这些药。我似乎没有认真对待我的药,”一位移植接受者说。“人们不知道每天两次服药有多难,”另一位患者告诉我。

Here are some of the side effects of immunosuppressants: diarrhea, weight gain, numbness, and a fruity smell on your breath. “One of them made me hairy,” a patient told me. “I kind of looked like a werewolf and had a unibrow.” Another told me, “I feel like I’m a fat kid. I can’t take my shirt off with a girl.” Oh, and the doctor tells you not to drink alcohol. Think about how those side effects conflict with your plans for a teenage social life. The kidney doctor with a clipboard and a white lab coat was telling you to accept your new life, with no objections, as an overweight, hairy kid with digestive problems, numb extremities, and stinky breath who can’t party and is embarrassed to swim shirtless. Skipping the pills—and their side effects—allows a young patient to temporarily forget that they’re different. It gives them a way to feel socially normal, however briefly.

以下是免疫抑制剂的一些副作用:腹泻、体重增加、麻木和口中有水果味。“其中一种药让我长毛,”一位患者告诉我。“我看起来有点像狼人,还有一条一字眉。”另一位告诉我:“我觉得自己像个胖孩子。我不能在有女孩的情况下脱掉衬衫。”哦,医生还告诉你不要喝酒。想想这些副作用与你青少年社交生活的计划有多冲突。拿着写字板和白色实验室外套的肾脏医生告诉你,接受你新的生活,不要有任何异议,作为一个超重、多毛、消化有问题、四肢麻木、口臭、不能聚会且不好意思光膀子游泳的孩子。不服用药物(也就没有副作用)让年轻患者可以暂时忘记他们是不同的。这让他们感觉能正常社交,尽管短暂。

The medication itself, therefore, is a potential threat to social survival. Maybe some young people do listen. Many others nod along, making their body language look like they’re listening, but they’re faking it. Their neurons are not processing the information. This is a reason why the standard patient-education process doesn’t always convince young people to adjust their habits and routines so that they take their medication seriously.

因此,药物本身可能对社交生存构成威胁。也许有些年轻人确实听了。许多其他人则点头附和,让他们的肢体语言看起来像是在听,但他们在假装。他们的神经元并没有处理这些信息。这就是为什么标准的患者教育过程并不总是能说服年轻人调整他们的习惯和日常,以便认真对待他们的药物。

And that is why, after billions of dollars spent over the last forty years to turn the miracle of pediatric organ transplants into a routine surgical procedure, the single biggest unsolved scientific puzzle has nothing to do with nephrons or the immune system. It has everything to do with navigating the complex world of adolescent behavior change.

这就是为什么,在过去的四十年里,尽管花费了数十亿美元,将儿科器官移植的奇迹变成了常规手术,但最大的未解科学难题与肾元或免疫系统无关,而是与如何导致青少年行为变化的复杂世界息息相关。

Dr. David Rosenthal, a pediatric heart-transplant doctor at Stanford University, told me that his experience working with teenagers makes him feel that he is “living in an alternative universe from my patients. I cannot imagine what they’re thinking.” Likewise, Dr. Steven Alexander warned that “we need to understand what young people need and give them what they need—or get ready to pay the consequences.”

斯坦福大学的儿科心脏移植医生大卫·罗森塔尔告诉我,他接触青少年的经历让他感觉像是“生活在与我病人不同的另一个宇宙中。我无法想象他们在想什么。”同样,斯蒂文·亚历山大警告说,“我们需要了解年轻人需要什么,并给予他们所需——否则就准备好承担后果。”