近年来，“尊严死”的话题逐渐进入公众视野。生前立下预嘱，以自己选择的方式离开，是每个人享有的权利。但是，我们今天的主角却有点特殊，他是一个只有十一个月大的英国男婴。当医生和法庭都宣布治疗无效、支持放弃治疗的时候，他的父母还在为延续他的生命奔走努力。“自然死亡”是对生命的尊重，但“尽人事”亦不失为另一种尊重。当生命与尊严不可避免地产生对立，背后的伦理追问，真的很难获得定论。
生与死的伦理追问：我的孩子不应被放弃治疗
译者：刘 璠
校对：倪凌晖
策划：刘 璠
When Parents and Doctors Disagree on What Futile Means
当家长和医生之间就何为无效治疗产生分歧
本文选自 Time | 取经号原创翻译
关注 取经号，回复关键词“外刊”
获取《经济学人》等原版外刊获得方法
He's only 11 months old, but Charlie Gard commands an army of the impassioned that numbers in the hundreds of thousands and includes a Popeand a President. This online platoon, including 350,000 people who have signed a petition on his behalf, is rallying behind his parents' singular mission — for Charlie to stay alive. A far smaller but equally committed group, including a hospital and a court, is fighting back, defending the medical community's right to decide when enough treatment is enough and to allow the baby to die with dignity and in peace. It's a moral argument with a challenging perception problem, as doctors are aligning to essentially stop the care they are committed to provide. And no matter what happens to Charlie, the questions raised by his case will endure.
查理·加德（Charlie Gard）只有11个月大，但却可以召集到一支包括教皇和总统在内的由成千上百位热心人士组成的“战队”。这支线上“战队”有35万人。他们在为查理发起的请愿书上签了名，支持查理父母去完成一项非凡的任务——让查理活下去。与此同时，一支包括医护人员和法官在内的队伍正在对这个请愿发起反击。虽然人数上远不如查理的“战队”，但他们拥有同样坚定的决心。他们为捍卫医护人员的决定权而战——医护人员有权决定是否有必要继续治疗，并让孩子有尊严地、平静地离去。这是一场关乎道德伦理的争论，其中包含着一个极难的认知问题。尽管医护人员们致力于救死扶伤，但这次他们却一致决定从根本上停止对查理的治疗。不管查理的命运如何，该案例引发的争议将会继续下去。
platoon /pləˈtu:n/ noun a small group of soldiers that is part of a COMPANY and commanded by a LIEUTENANT （军队的）排
singular /ˈsɪŋgjələ(r)/ adj. (formal) very great or obvious 非凡的；突出的；显著的
Charlie was born last August with a rare mitochondrial depletion syndrome that renders his cells unable to pull energy from his body. The disorder has left parts of his brain so damaged that he can't breathe on his own or hear. For the majority of his short life, he has lived in the neonatal intensive-care unit at Great Ormond Street Hospital in London, relying on machines to breathe for him. He can't move his arms and legs and suffers from seizures that require medications to control. This spring, the hospital determined that nothing more could be done to help him and that his life of tubes and monitors doesn't have the quality a human deserves. Removing him from life support would be, in its opinion, the most humane option for him.
患有先天性线粒体缺失综合症（mitochondrial depletion syndrome）的查理于去年8月出生。这种病症使得他自身的细胞无法从体内获得能量，损坏了他的部分大脑，使他无法自主呼吸，也丧失了听觉。在短暂的生命中，查理大部分时间住在伦敦大奥蒙德街医院（Great Ormond Street Hospital）的新生儿重症监护室（the neonatal intensive-care unit，NICU）中，依靠机器呼吸。他不能移动手脚，而且可能会突然发病，只能通过药物控制。今年春天，医院方面决定，对于查理他们已经无能为力，并且认为目前这种依靠插管和监视器才能维持的状态对于一个“人”来说没有丝毫生活质量可言。在医院看来，移除他的生命维持系统是最人道的做法。
seizure /ˈsi:ʒə(r)/ noun(old-fashioned) [C] a sudden attack of an illness, especially one that affects the brain （疾病，尤指脑病的）侵袭，发作
His parents Connie Yates and Chris Gard disagree. While they recognize their son's medically precarious state, they have staked their hope on an experimental therapy that has never before been tested on humans with Charlie's condition. If there is a chance that Charlie could get better, even if he doesn't recover completely, then they should have the right to take it, they say. "He's our son. We feel it should be our right to decide to give him a chance at life," Yates said to British broadcasters. "We don't know until we try. He's still fighting, and we're still fighting." So why would a hospital take a moral stand against treatment and against parents' wishes?
但查理的父母康妮·耶茨（Connie Yates）和克里斯·加德（Chris Gard）并不同意。虽然他们认识到儿子已经病危，但他们仍然把希望寄托于一种从未在查理这种情况下测试过的实验性疗法上。他们说，即使查理不会全完康复，但是只要有一丝希望，他们就有权让他接受治疗。耶茨对英国的节目主持人说：“他是我们的孩子。我们认为我们有权决定是否给予他生的机会。如果我们不去尝试，我们就永远不会知道结果。他还在与病魔斗争，我们也是。”所以，为什么医院要站在道德的立场上，反对继续治疗，违背家长的愿望呢？
precarious /prɪˈkeəriəs; prɪˈkerəriəs/ adj. (of a situation 情势)not safe or certain; dangerous 不稳的；不确定的；不保险的；危险的
Doctors aren't obligated to provide treatment that they feel is inhumane or ineffective. Before recommending that Charlie be taken off of life support, his doctors considered the experimental therapy but concluded that his brain had been so damaged that he wasn't likely to improve if he received it. "Doctors in this case could have said, He's going to suffer, it's going to be really unpleasant and painful for him, but what the hell, it's not our problem," says Jonathan Moreno, a professor of medical ethics at the University of Pennsylvania, about acceding to the parents' wishes. "Would we want our doctors to think that way and wash their hands of that obligation? I don't think so."
医生没有义务提供在他看来是不人道且无效的治疗。在给出移除生命维持系统的方案之前，查理的医生已经考虑过上述实验性疗法，但他们认为，按照查理大脑的损伤程度，即使接受治疗，他的状况也不会好转。宾夕法尼亚大学（University of Pennsylvania）的医疗伦理学教授乔纳森·莫雷诺（Jonathan Moreno）表示支持孩子父母的愿望。他说：“在这个病例中，医生们好像是在说，查理将继续受到折磨，他会十分难受和痛苦，但这又怎样，又不关我们的事。难道我们希望我们的医生是这么想的吗？难道我们希望我们的医生就此甩手不干了吗？我并不这么认为。”
accede /əkˈsi:d/ verb ~ (to sth) (formal) to agree to a request, proposal, etc. 同意（请求、建议等）
Parents apply a very different emotional calculus to the notion of futility, says Dr. Margaret Moon, a pediatrician from the Johns Hopkins Berman Institute of Bioethics. For some, there is no such thing as futile medical care, given that their only priority is keeping their child alive. That's the position the parents of Baby K took when they insisted on continued life support for their daughter, who was born with only a partial brain and had trouble breathing on her own. For others, like Charlie's parents, the threshold of futility is reached only when they have exhausted every possible treatment option, however uncertain the outcome.
约翰·霍普金斯大学博曼生命伦理学院（Johns Hopkins Berman Institute of Bioethics）的儿科医生玛格丽特·穆恩（Margaret Moon）博士说：“家长们对于无效治疗在情感上有着截然不同的理解。对一些人来说，他们一心想着如何让自己的孩子活下去，那么就没有所谓的无效医疗一说了。婴儿K的父母就采取了这样一种态度。这个孩子一出生就有部分大脑缺失，不能自主呼吸。但是家长坚持继续给予女儿生命支持。对另一些人来说，比如查理的父母，不管结果是好是坏，只有穷尽了所有可能的治疗方案，他们才会承认治疗无效。
threshold /ˈθreʃhəʊld; -hoʊld/ nounthe level at which sth starts to happen or have an effect 阈；界；起始点
In the U.S., such conflicts are generally resolved in favor of the parents. When doctors don't feel medically and ethically able to continue futile treatment for a child, they offer parents the opportunity to find other hospitals that would. "In the U.S. we have created a culture where everybody should get whatever health care they want," says David Magnus, director of the Center for Biomedical Ethics at Stanford University. "As long as neither neglect nor abuse is involved, we give parents tremendous latitude in making decisions for their children."
在美国，这样的冲突往往以向家长一方妥协而告终。当医生认为，无论从医学上还是伦理上，都无法继续为孩子提供这种无效治疗的时候，他们会建议家长去别家愿意继续提供治疗的医院。斯坦福大学生物医疗伦理中心（the Center for Biomedical Ethics at Stanford University）的负责人戴维·马格纳斯（David Magnus）说：“在美国，我们的文化是，每个人都应该获得所有他想要的治疗。只要不涉及到疏忽职守和滥用资源，我们给予家长充分的自由去为孩子做选择。”
latitude /ˈlætɪtju:d; NAmE -tu:d/ noun [U] (formal) freedom to choose what you do or the way that you do it 选择（做什么事或做事方式）的自由
That's not the case in the U.K., in large part because of the country's single-payer national health system. It's more routine for the medical community, and the courts, to make decisions about what's acceptable care, what's excessive care and even, as in Charlie's case, when care should stop.
但在英国却不是这样，主要是因为英国实行的是国家统一支付的全民医疗体系（single-payer national health system）。常见的情况是：由医护人员、法庭来决定什么是合理治疗、什么是过度治疗，甚至像查理一案中，什么时候应当停止治疗。
#读译交流#
后台回复 读译会，参与取经号Q群交流
#外刊资源#
后台回复 外刊，获取《经济学人》等原版外刊获得方法
#关注取经号#
扫描 二维码，关注跑得快的取经号（id: JTWest）
