和性教育同样重要的,是死亡教育

编辑:给力英语新闻 更新:2017年9月22日 作者:纽约时报中文网赫海威(JESSICA NUTIK ZITTER)

五年前,我给女儿泰莎的班级上了性教育课。上周,我又给女儿萨莎的班级上了死亡教育课。这两门课我真的不想让别人来教。我希望女儿和班上其他孩子知道所有可能等待着他们的棘手情况。我不希望任何人拐弯抹角地说话或者使用委婉语。况且,这两门课也没有别的什么人能讲。而且所有课程大纲里都没有死亡教育这门课。

那时候泰莎听说我要去给她的七年级同学们讲性教育,顿时窘得要命。丈夫建议她在脑袋上扣个纸袋子,她翻了个白眼走开了。上课那天,她溜到教室最后,坐在桌边,低下头藏在书包后面。

刚一开始,13个女孩惊惶不安地看着我。我知道我得说出那几个她们此时正在害怕的字眼,好让话题能够转到重点上去。“阴茎和阴道,”我说,有人紧张地吃吃笑了起来。一支铅笔掉在地上。压力释放出来之后,我开始谈论避孕、拒绝、同意、怀孕、性病,甚至迷奸药。一个小时过去了,孩子们积极地举手提问,女儿的头也从书包后面抬了起来。

早在1892年,全国教育协会(National Education Association)就开始推广性教育课程,把它纳入全国教学大纲的必修部分。随着信息传播,以及越来越便捷的生育控制,意外怀孕开始下降,性病发病率大幅降低。在这个问题上,知识真的是力量。

我相信,关于死亡也是如此。

我在加利福尼亚州奥克兰的一家医院工作,是一名从事重症治疗和姑息治疗的医生。我喜欢运用那些高科技手段来挽救重症监护室内患者的生命。但我也看到,同样是这些手段,为许多正在走向生命终点的病人带去深深的痛苦。我们有太多患者在过度医疗的情况下死去,在并非出于自己选择的情况下使用各种治疗和技术,即使它们已经不太可能对患者有帮助。在死亡之前滞留重症监护室的日子里,许多患者都要使用呼吸机和饲喂管,让液体能量通过这些管子流进胃里。患者的手臂经常受到约束,以防各种管子和导管意外脱落。

我照顾过的许多患者尽管疾病恶化、反复入院,但他们并不知道自己就要死去。其原因是复杂多样的,比如医生在通知病人坏消息这方面没有受过良好训练,以及人们对于科技终将以某种方式战胜死亡的集体期望。在患者濒死之时,他们往往已经太过虚弱,或是没有能力表达自己在死亡方式上的偏好,更何况他们的选择往往不被考虑。患者通常无法得到他们想要的结果。例如,80%的美国人表示宁愿在家里死去,但只有20%的人实现了这个愿望。

我们许多人会选择计划妥当之后,在我们所爱的人围绕之下安适地死去。但是如果你不知道自己即将死去,就无法为一个好的死亡做准备。我们需要学习如何在生活中为死亡留出空间,我们还需要学习如何为它做好准备。在大多数情况下,一些死亡教育和我们的医疗系统可能会避免,或是至少减轻这种痛苦。事实上,当患者做好准备时,他们临终时会不那么痛苦。当他们思考过自己的目标与价值观,分门别类地考虑过种种偏好之后,他们会做出不同的选择。我们在临终关怀方面所给予的东西,几乎总是超出病患想要的范畴。

我一直热心倡导教育青少年对自己的性行为负责任。我同样认为,我们早该对他们进行死亡教育,这是人生同样重要的一个阶段,缺乏准备的后果同样糟糕,甚至可以说更糟。在理想的情况下,这种教育应当在青少年可能需要它之前尽早进行。

我建议在所有高中内进行死亡教育。我认为这门课程是一种公民责任。我知道这听上去可能很激进,但是请耐心听我说。为什么死亡被视为比性更严重的忌讳?二者同样是生命的自然环节。我们可能会认为死亡太可怕了,不适合同孩子们谈起,但我相信,一场痛苦死亡的后果要糟糕得多。死亡教育旨在令这一生命过程变得正常化,并鼓励学生为自己或家人做好准备,不管死亡将于何时降临。

在我工作的重症监护室里,每一年,我都能看到几十个年轻人陪在弥留亲人的床边。如果我们在高中开展死亡教育,那么一位探望弥留祖父母的学生可能会想到课程中学到的知识,问出可能改变整个对话的问题。例如,她可能会要求进行姑息治疗咨询,或分享她在课程中学到的关于患者偏好的重要信息。高中是学生们开始获得驾驶执照和考虑器官捐赠的时候,这是接受死亡教育的完美时机。还有其他什么东西更能吸引全社会的关注?

上周,我和同事道恩·格罗斯(Dawn Gross)来到奥克兰的海德-罗伊斯中学(Head-Royce School),一家进步(而且勇敢)的私立学校,为我女儿的九年级班级上了我们的第一堂死亡教育课。就像在性教育课上一样,刚进教室时,我们先要尽早摆脱一些让人不舒服的字眼,比如死亡、癌症、失智。我们给学生们放了电视剧《实习医生格蕾》(Grey’s Anatomy)里一些不现实的急救片段,讲解了它们的错误之处。我们直言不讳地描述了重症监护室里的生活现实——用机器延长生命的效果、手臂约束、隔离。所有人都认真听着,他们有些犹疑,但都聚精会神。

然后我们以另一种方式呈现材料。我们教他们玩“Go Wish”纸牌游戏,它可以让家人在娱乐中较为放松地进行艰难的对话。我们要求学生确定自己最重要的偏好和价值观,无论是关于生活,还是关于可能降临的死亡。我们讨论了如何将这些偏好传达给医疗团队和自己的家人。

他们的回应令我们非常欣慰。他们很快就投入进去,毫不掩饰地谈论自己关于死亡的偏好。一个女孩告诉另一个人,她想确保自己不成为家人的负担。还有一个男孩表示,祖父最近正在为健康而惶恐,他希望能和祖父一起玩“Go Wish”。

我和道恩离去时笑容满面。没有人晕倒。没有人尖叫着跑出教室。健康老师告诉我们,学生们的参与程度令她感到惊讶。我希望这只是第一步,让我们接下来可以继续在公众中普及关于死亡的认知,这个生命阶段最终会影响到我们所有人。我们越早开始谈论它越好。

Jessica Nutik Zitter在加利福尼亚奥克兰的高地医院从事重症监护和姑息医学。著有《极端手段:找到生命终结更好的道路》(Extreme Measures: Finding a Better Path to the End of Life)。
翻译:晋其角

First, Sex Ed. Then Death Ed.

FIVE years ago, I taught sex education to my daughter Tessa’s class. Last week, I taught death education to my daughter Sasha’s class. In both cases, I didn’t really want to delegate the task. I wanted my daughters and the other children in the class to know about all of the tricky situations that might await them. I didn’t want anyone mincing words or using euphemisms. Also, there was no one else to do it. And in the case of death ed, no curriculum to do it with.

When Tessa heard I’d be teaching sex ed to her fellow seventh graders, she was mortified. My husband suggested she wear a paper bag over her head, whereupon she rolled her eyes and walked away. When the day arrived, she slunk to the back of the room, sat down at a desk and lowered her head behind her backpack.

As I started in, 13 girls watched me with trepidation. I knew I needed to bring in the words they were dreading right away, so that we could move on to the important stuff. “Penis and vagina,” I said, and there were nervous giggles. A pencil dropped to the floor. With the pressure released, I moved on to talking about contraception, saying no, saying yes, pregnancy, sexually transmitted diseases, even roofies. By the end of the hour, hands were held urgently in the air, and my daughter’s head had emerged from behind her backpack.

Sexual education programming was promoted by the National Education Association as far back as 1892 as a necessary part of a national education curriculum. As information spread and birth control became increasingly available, unwanted pregnancies dropped, and rates of S.T.D.s plummeted. In this case, knowledge really is power.

I believe that this is true of death, too.

I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common.

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.

Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them.

I am a passionate advocate for educating teenagers to be responsible about their sexuality. And I believe it is past time for us to educate them also about death, an equally important stage of life, and one for which the consequences of poor preparedness are as bad, arguably worse. Ideally this education would come early, well before it’s likely to be needed.

I propose that we teach death ed in all of our high schools. I see this curriculum as a civic responsibility. I understand that might sound radical, but bear with me. Why should death be considered more taboo than sex? Both are a natural part of life. We may think death is too scary for kids to talk about, but I believe the consequences of a bad death are far scarier. A death ed program would aim to normalize this passage of life and encourage students to prepare for it, whenever it might come — for them, or for their families.

Every year in my I.C.U. I see dozens of young people at the bedsides of dying relatives. If we started to teach death ed in high school, a student visiting a dying grandparent might draw from the curriculum to ask a question that could shift the entire conversation. She might ask about a palliative care consultation, for example, or share important information about the patient’s preferences that she elicited during her course. High school, when students are getting their drivers’ licenses and considering organ donation, is the perfect time for this. Where else do we have the attention of our entire society?

Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.

And then we presented the material another way. We taught them how to play “Go Wish,” a card game designed to ease families into these difficult conversations in an entertaining way. We asked students to identify their most important preferences and values, both in life and as death might approach. We discussed strategies for communicating these preferences to a health care team and to their own families.

We were delighted by their response. It didn’t take them long to jump in. They talked openly about their own preferences around death. One teenager told another that she wanted to make sure she wasn’t a burden to her family. A third said he was looking forward to playing “Go Wish” with his grandfather, who recently had a health scare.

Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better.

Jessica Nutik Zitter practices critical care and palliative medicine at Highland Hospital in Oakland, Calif., and is the author of “Extreme Measures: Finding a Better Path to the End of Life.”