好英语网安乐死：一位医生的人生选择
SEATTLE — Dr. Richard Wesley has amyotrophic lateral sclerosis, the incurable disease that lays waste to muscles while leaving the mind intact. He lives with the knowledge that an untimely death is chasing him down, but takes solace in knowing that he can decide exactly when, where and how he will die.
西雅图——理查德·韦斯利(Richard Wesley)医生患有肌萎缩性脊髓侧索硬化症。这种无药可治的疾病让他的肌肉麻痹无力，但头脑却完好无损。他深知命运无常，死之将至，但聊以慰藉的是，他可以决定何时、何地、以及如何告别人世。
Under Washington State’s Death With Dignity Act, his physician has given him a prescription for a lethal dose of barbiturates. He would prefer to die naturally, but if dying becomes protracted and difficult, he plans to take the drugs and die peacefully within minutes.
根据华盛顿州的《尊严死亡法案》(Death With Dignity Act)，韦斯利的医生给他开具了足以致死剂量的巴比妥类药物处方（一系列具有镇静催眠作用的药物——编者注）。韦斯利更愿意自然离世，但如果死亡过程变得持久且痛苦，他便计划服下药物，在几分钟内安详长眠。
理查德·韦斯利医生在2008年被查出得了肌萎缩性脊髓侧索硬化症。图为他在家中，与妻子和两个孩子在一起。
“It’s like the definition of pornography,” Dr. Wesley, 67, said at his home here in Seattle, with Mount Rainier in the distance. “I’ll know it’s time to go when I see it.”
“这和色情片的定义差不多，”67岁的韦斯利医生在他位于西雅图、可以遥望雷尼尔山的家中说道，“我自己看一眼，就知道判断的标准是什么。”
Washington followed Oregon in allowing terminally ill patients to get a prescription for drugs that will hasten death. Critics of such laws feared that poor people would be pressured to kill themselves because they or their families could not afford end-of-life care. But the demographics of patients who have gotten the prescriptions are surprisingly different than expected, according to data collected by Oregon and Washington through 2011.
继俄勒冈州之后，华盛顿州也通过法案，允许身患绝症的病人临终时从医生处获取可以加速其死亡的药物的处方。这类立法常招致非议，反对者担心家境窘迫的人会迫于自己或家人无力负担临终护理的开支而自杀。但2011年全年由俄勒冈州和华盛顿州收集的数据却表明，那些真正拿到“安乐死处方”的患者，其个人情况与此前预想的大为不同。
Dr. Wesley is emblematic of those who have taken advantage of the law. They are overwhelmingly white, well educated and financially comfortable. And they are making the choice not because they are in pain but because they want to have the same control over their deaths that they have had over their lives.
韦斯利医生是受益于这项法案的患者中的典型代表。他们中绝大多数是白人，受过高等教育，经济状况良好。此外，他们做出决定的原因不是因为身体上的痛苦，而是因为想要对自己的生活和死亡拥有同等程度的掌控力。
While preparing advance medical directives and choosing hospice and palliative care over aggressive treatment have become mainstream options, physician-assisted dying remains taboo for many people. Voters in Massachusetts will consider a ballot initiative in November on a law nearly identical to those in the Pacific Northwest, but high-profile legalization efforts have failed in California, Hawaii and Maine.
舍弃激进的治疗方案，预先设立医疗指示（advance medical directives，也称预立医嘱，人们在健康或还未失去理性决定能力时以书面形式指明特定情况下自己偏好的治疗方式，例如不使用心肺复苏术及生命维持系统等——编者注）和选择临终关怀及姑息疗法已经逐渐成为病人的主流选择。尽管如此，对于许多人来说，由医生协助病人结束生命仍属禁忌话题。马萨诸塞州的选民今年11月或许会以不记名投票方式对一项与俄勒冈和华盛顿两州立法类似的法案进行表决，但在加利福尼亚州、夏威夷州和缅因州，此前引人瞩目的相关立法尝试却遭遇失败。
Oregon put its Death With Dignity Act in place in 1997, and Washington’s law went into effect in 2009. Some officials worried that thousands of people would migrate to both states for the drugs.
俄勒冈州1997年通过了该州的《尊严死亡法案》，华盛顿州的法案也在2009年正式生效。官方人士一度担心，会有成千上万的人移居到这两个州以获得药物。
“There was a lot of fear that the elderly would be lined up in their R.V.’s at the Oregon border,” said Barbara Glidewell, an assistant professor at Oregon Health and Science University.
“很多人担心，老年人会开着他们的旅行房车在俄勒冈边境排起长队，”俄勒冈健康与科学大学(Oregon Healthand Science University)的助理教授芭芭拉·格莱德韦尔(Barbara Glidewell)说。
That has not happened, although the number of people who have taken advantage of the law has risen over time. In the first years, Oregon residents who died using drugs they received under the law accounted for one in 1,000 deaths. The number is now roughly one in 500 deaths. At least 596 Oregonians have died that way since 1997. In Washington, 157 such deaths have been reported, roughly one in 1,000.
那种场面并未出现，尽管从该项法案中获益的人数确实有所增加。最初几年里，援引该法案获得药物并借助药物离世的俄勒冈州居民仅占该州总死亡人数的千分之一。现在，数字上升为约500分之一。1997年以来，至少有596名俄勒冈居民以此种方式去世。在华盛顿州，有记录可查的该类死亡有157起，约为千分之一。
In Oregon, the number of men and women who have died that way is roughly equal, and their median age is 71. Eighty-one percent have had cancer, and 7 percent A.L.S., which is also known as Lou Gehrig’s disease. The rest have had a variety of illnesses, including lung and heart disease. The statistics are similar in Washington.
在俄勒冈州，选择这种死亡方式的男性和女性人数大致相同。他们的中位年龄为71岁。其中81%的人患有癌症，7%的人患肌萎缩性脊髓侧索硬化症，这种病也被称为葛雷克氏症。剩下的人则身患包括肺心病在内的多种疾病。华盛顿州的数据也大体相似。
There were fears of a “slippery slope” — that the law would gradually expand to include those with nonterminal illnesses or that it would permit physicians to take a more active role in the dying process itself. But those worries have not been borne out, experts say.
有人担心会由此导致“滑坡效应”——法案适用人群可能会逐渐扩展到并非患有恶性晚期疾病的人身上，它还可能助长医生主动加快死亡过程之风。但专家们指出，这些疑虑迄今为止并未得到证实。
Dr. Wesley, a pulmonologist and critical care physician, voted for the initiative when it was on the ballot in 2008, two years after he retired. “All my career, I believed that whatever makes people comfortable at the end of their lives is their own choice to make,” he said.
身为呼吸内科专家和重症监护医生，韦斯利在2008年《尊严死亡法案》的投票公决中投了赞成票。那时他刚退休两年。“在我的职业生涯中，我一直坚信，如何让人在生命最终阶段感觉舒适应当是患者自己的选择，”他如此说道。
But Dr. Wesley had no idea that his vote would soon become intensely personal.
但韦斯利医生未曾想到，他的立场会这么快便与自己的命运密切相关。
In the months before the vote, he started having trouble lifting weights in the gym. He also noticed a hollow between his left thumb and index finger where muscle should be. A month after casting his vote, he received a diagnosis of A.L.S. Patients with the disease typically live no more than four years after the onset of symptoms, but the amount of time left to them can vary widely.
投票表决前几个月，他在健身房练习举重时开始感觉费力。他还注意到，左手的大拇指和食指之间出现了一处凹陷，那儿本来应该是肌肉所在的位置。投票后一个月，他拿到了肌萎缩性脊髓侧索硬化症的诊断书。患有这种疾病的人在症状出现后通常活不过四年，但每个人的存活时间相差可能十分悬殊。
In the summer of 2010, after a bout of pneumonia and with doctors agreeing that he most likely had only six months to live, Dr. Wesley got his prescription for barbiturates. But he has not used them, and the progression of his disease has slowed, although he now sits in a wheelchair that he cannot operate. He has lost the use of his limbs and, as the muscles around his lungs weaken, he relies increasingly on a respirator. His speech is clear, but finding the air with which to talk is a struggle. Yet he has seized life. He takes classes in international politics at the University of Washington and savors time with his wife and four grown children.
2010年夏天，一场肺炎之后，韦斯利的医生们一致认为，他最多只剩下六个月的时间。韦斯利医生拿到了巴比妥类药物的处方。但他一直都没用上这些药物，病情的发展进程也有所延缓——虽然他如今仍只能坐在一张无法自行操作的轮椅上。他的四肢已经不能活动，肺部外围的肌肉也衰弱无力，越来越依赖呼吸器。他的话语依然清晰，但却上气不接下气。然而，他仍尽力扼住命运的喉咙。他在华盛顿大学选修了国际政治课程，同时与妻子和四个已经成年的孩子品味着时光。
In both Oregon and Washington, the law is rigorous in determining who is eligible to receive the drugs. Two physicians must confirm that a patient has six months or less to live. And the request for the drugs must be made twice, 15 days apart, before they are handed out. They must be self-administered, which creates a special challenge for people with A.L.S.
在俄勒冈和华盛顿，法律对于得到药物的病人资格规定均相当严格。必须有两名医生确认病人的有生之日不足6个月。此外，病人需要两次提出申请，中间至少间隔15天，才能最终得到药物。他们还必须自行服下药物。对于肌萎缩性脊髓侧索硬化症患者来说，这一点格外困难。
Dr. Wesley said he would find a way to meet that requirement, perhaps by tipping a cup into his feeding tube.
韦斯利医生说，到时候，他会想办法满足要求，比如把装在杯子里的药物倒进喂食管里。
The reasons people have given for requesting physician-assisted dying have also defied expectations.
人们给出的关于寻求安乐死的原因也与此前设想的大相径庭。
Dr. Linda Ganzini, a professor of psychiatry at Oregon Health and Science University, published a study in 2009 of 56 Oregonians who were in the process of requesting physician-aided dying.
2009年，俄勒冈健康与科学大学的精神病学教授琳达·甘齐尼(Linda Ganzini)发表了一项针对56名正在寻求安乐死的俄勒冈人的调查结果。
“Everybody thought this was going to be about pain,” Dr. Ganzini said. “It turns out pain is kind of irrelevant.”
“每个人都以为原因在于疼痛，但结果表明，疼痛与此根本无关，”甘齐尼指出。
At the time of each of the 56 patients’ requests, almost none of them rated pain as a primary motivation. By far the most common reasons, Dr. Ganzini’s study found, were the desire to be in control, to remain autonomous and to die at home. “It turns out that for this group of people, dying is less about physical symptoms than personal values,” she said.
当这56名患者各自提出安乐死请求时，几乎没有一个人将疼痛作为主要诱因。甘齐尼医生的研究发现，最常见的原因是想要掌控自己的命运、保持自主性以及在家中寿终正寝。“结果表明，对于这群人来说，死亡更多关乎个人价值而非身体上的症状，”她指出。
The proposed law in Massachusetts mirrors those in Oregon and Washington. According to a telephone survey conducted in May by the Polling Institute at Western New England University, 60 percent of the surveyed voters supported “allowing people who are dying to legally obtain medication that they could use to end their lives.”
即将提交表决的马萨诸塞州法案与俄勒冈州和华盛顿州的成法如出一辙。据西新英格兰大学(Western New England University)民意测验研究所(Polling Institute)5月份进行的电话调查结果，在接受调查的选民中，60%的人支持“允许临终病人合法获得可以用来结束生命的药物”这一选项。
“Support isn’t just from progressive Democrats, but conservatives, too,” said Stephen Crawford, a spokesman for the Dignity 2012 campaign in Massachusetts, which supports the initiative. “It’s even a libertarian issue. The thinking is the government or my doctor won’t control my final days.”
“支持不仅来自进步派的民主党人，也来自保守主义者，”马萨诸塞州“尊严2012”运动的发言人斯蒂芬·克劳福德(Stephen Crawford)指出。他本人即是这项提案的支持者之一。“这个问题可以上升到自由意志的高度。问题本质在于，无论是政府或我的医生都不能控制我生命最终的时光。”
Such laws have influential opponents, including the Roman Catholic Church, which considers suicide a sin but was an early leader in encouraging terminal patients to consider hospice care. Dr. Christine K. Cassel, a bioethicist who is president of the American Board of Internal Medicine, credits the church with that effort. “But you can see why they can go right up to that line and not cross over it,” she said.
此类法案也面对着影响力巨大的反对力量，其中便包括罗马天主教会。天主教会认为自杀是一种犯罪行为，但在鼓励临终病人寻求临终关怀领域却是先行者。美国内科学委员会(American Boardof Internal Medicine)主席、生物伦理学家克里斯蒂娜·K.卡塞尔(Christine K.Cassel)认为，教会在后一项上做出不少贡献。“但你也能明白，为什么他们可以迎头赶上但却不越过那条界限，”她说。
The American Medical Association also opposes physician-assisted dying. Writing prescriptions for the drugs is antithetical to doctors’ role as healers, the group says. Many individual physicians share that concern.
美国医学会(American Medical Association)也反对医生协助自杀。该组织称，对于肩负着治愈者使命的医生，开具安乐死药物处方是不合伦理的。许多医生私下里都持类似想法。
“I didn’t go into medicine to kill people,” said Dr. Kenneth R. Stevens, an emeritus professor of radiation oncology at Oregon Health and Science University and vice president of the Physicians for Compassionate Care Education Foundation.
“我可不是为了杀人才学医的，”俄勒冈健康与科学大学放射肿瘤学荣休教授肯尼思·R·史蒂文斯(Kenneth R. Stevens)医生说。他同时也是临终关怀教育医师基金会(Physicians for Compassionate Care Education Foundation)的副会长。
Dr. Steven Kirtland, who has been Dr. Wesley’s pulmonologist for three years, said he had little hesitation about agreeing to Dr. Wesley’s request, the only prescription for the drugs that Dr. Kirtland has written.
在过去三年中，史蒂文·柯特兰(Steven Kirtland)一直担任韦斯利医生的呼吸内科主治医生。他说，面对韦斯利的请求，他几乎毫不犹豫便答应了。那是他开出的唯一一张安乐死处方。
“I’ve seen a lot of bad deaths,” Dr. Kirtland said. “Part of our job as physicians is to help people have a good death, and, frankly, we need to do more of that.”
“我目睹过许多糟糕的死亡事件，作为医生，我们工作的一部分应该是帮助人们得到善终。坦白地讲，我们需要在这一点上多多努力，”柯特兰医生指出。
Dr. Wesley’s wife, Virginia Sly, has come to accept her husband’s decision. Yet she does not want the pills in the house, and he agrees. “It just feels so negative,” she said. So the prescription remains at the pharmacy, with the drugs available within 48 hours.
韦斯利医生的妻子弗吉尼亚·斯莱(Virginia Sly)渐渐接受了丈夫的决定。然而，她不愿意在家中存放安乐死药物，韦斯利对此表示赞同。“那样感觉上太消极了，”她说。于是，处方被保留在药店中，需要时可以在48小时内拿到药物。
There are no studies of the psychological effect of having a prescription on hand, but experts say many patients who have received one find comfort in knowing they have or can get the drugs. About a third of those who fill the prescription die without using it. “I don’t know if I’ll use the medication to end my life,” Dr. Wesley said. “But I do know that it is my life, it is my death, and it should be my choice.”
目前仍无研究表明拥有“安乐死处方”所能带来的心理影响，但专家指出，许多一方在手的病人对于知道自己一旦有需要便可拿到药物这件事深感欣慰。在那些凭处方拿到药物的人中，约三分之一并未借助这些药物告别人世。“我不知道会不会用药物结束自己的生命，”韦斯利医生说，“但我知道，这是我自己的生命，我自己的死亡，因此也就应该是我自己的选择。”