[2008.08.02] 临终关怀：桑榆迟暮

End-of-life care
临终关怀

Into the sunset
桑榆迟暮

Jul 31st 2008
From The Economist print edition

The idea that the terminally ill need pain relief and humane care instead of “curing” is catching on. But what about the people who just grow old?
绝症患者所需要的不是”治疗”，而是减轻痛苦和人道关怀，这一点正逐步得到认同。但对那些走向死亡的老者又应如何？

“MOST things may never happen: this one will.” That stark allusion to death, penned by the poet Philip Larkin, sums up the philosophical starting-point of the hospice movement, which began in Britain 40 years ago and has since become influential, in various ways, in almost every corner of the world. Given that your time on earth is bound to finish one day, assuring a decent quality of life in the final months and years often makes better sense than trying to prolong a painful existence for a short period; so in many cases, loving care and pain relief should take priority over aggressive intervention. When Dame Cicely Saunders, who founded the Saint Christopher’s Hospice in London in 1967, first aired those ideas, the medical world was hostile. Now her beliefs enjoy wide acceptance.
“世间事多数未必发生，唯有这一桩必定发生。”诗人菲利普•拉金如此点出死亡的本质，而这也正是临终关怀行动的哲学依据。这一行动40年前肇起英国，此后影响逐步扩大，近乎扩展至全球。人生终须尽，有尊严地走过最后岁月往往强过痛苦地延续几天生命。因此多数情况下，应对患者给予悉心的关怀，帮助其减轻痛苦，而非粗暴地干涉天命。曾在1967年创建了伦敦圣克里斯托弗临终关怀院的桑德斯女士首次提出上述观点时，曾遭到医疗界的抵触。如今，已有为数众多的人与她抱有同样信仰。

One sign of that change is the establishment of thousands of hospices, places dedicated to caring rather than curing. Another is the way in which doctors, nurses and patients in many other institutions have absorbed the movement’s thinking.
变化的标志之一是数千所临终关怀院的设立，这些机构致力于疗心而非疗身。标志之二，是许多其它机构的医护人员及患者均接受了临终关怀的理念。

America’s first hospice was founded in 1974, and the idea spread rapidly. Half of all Americans will now use hospice care at some point in their lives, and around 75% of deaths in American hospitals occur after an explicit decision not to intervene.
美国的第一家临终关怀院成立于1974年。此后，临终关怀的理念迅速流行。如今，半数美国人在关怀院度过人生最后时光。美国75%的绝症患者选择放弃治疗，听凭天命。

In Europe, too, there has been a revolution in attitudes to care for people who are nearing the end of life, and in people’s willingness to broach the subject. Lukas Radbruch, president of the European Association for Palliative Care, recalls that when he started working as a doctor in the field 20 years ago, Germans did not want to talk about death. Now he is in demand as a lecturer to groups like the Rotary club.
对于如何关心临终病人，欧洲人的态度也大有改观，不再回避这个话题。对此，欧洲缓痛护理协会主席卢卡斯•拉德布拉齐深有体会。20年前，当他刚开始从事临终关怀时，德国人对于死亡讳莫如深。如今，卢卡斯成为各大团体讲堂的座上宾，其中包括”扶轮社” 。

Yet for all its successes, the hospice movement faces challenges that will far outstrip the resources now dedicated to palliative care, even in the richest countries. Hospices are generally associated with cancer, where after a certain stage life expectancy is short and fairly predictable. But the current habit of treating people as “either temporarily immortal, or dying”-as Joanne Lynn, an American geriatrics expert, puts it-makes no sense when patients suffer chronic disease of the heart or lungs, or succumb slowly to dementia, or to general decay. An important category of people, already huge in the rich world and soon to grow in developing countries, consists of elderly people who will never be well, but have no idea when they will die. There is no single answer: hospitals, nursing homes and family care will all play a role.
但临终关怀运动仍面临挑战，使得目前用于缓痛护理上的资源投入大量流失，即便是在发达国家，此种情况也有发生。临终关怀的对象多数是癌症患者。癌症恶化到一定阶段后，患者一般都去日无多。但目前对病人的救治，正如老年病专家乔安娜•林恩所说，”要么把他们看作不死，要么把他们看作必死”。这种治疗观念对于患心脏或肺部慢性疾病、老年痴呆症，或是系统衰竭的患者来说毫无益处。在发达国家，存在着大量健康状况不佳，但并未患绝症的老年人口，这一人群在发展中国家也将逐渐扩大。这一问题只有通过医院、养老院和家庭三方的共同努力才能解决。

Looking after the old is bound to be complicated; elderly people with several diseases can all too easily find themselves bounced from family doctor to health adviser to specialists in one field after another. But depending on their medical and political culture, different countries are tackling the problem in different ways.
照顾老年人并不简单；那些身患多种疾病的老年人经常在家庭医生、健康顾问或是专科医生之间无所适从。对此，依据本国医疗及政治环境的不同，各国有着不同的解决途径。

Planning for a big demographic challenge should, in theory, be easier for European countries that have unified health systems-based either on state provision or compulsory insurance-than it is in America, where medical care is diversified and mainly private. But even in Europe’s most socialised bastions, hospices tend to be privately or charitably funded, at least in part. Clever synergy will therefore be needed between public policy and these firmly independent institutions. Spain’s Catalonia region is one of the rare places where hospices have been set up in a top-down way by the state.
欧盟各国的卫生体系已融合一体，理论上说，针对全体人口的总体规划较为可行，这一规划可通过政府补贴或是强制保险实现。相比之下，美国的医疗体系更为多元，私营机构也更为发达。但即便是在欧洲社会化程度最高的国家，临终关怀机构的资金也更多地来自私营或是慈善机构。公共政策与独立机构之间巧妙的磨合就不可或缺。西班牙的加泰罗尼亚大区就是为数不多的由国家设立临终关怀院的地区之一。

Elsewhere in Europe, every country has its own approach. Belgium trains all its family doctors in palliative care, but has very few specialist teams of carers. The Netherlands has hospice units of two to four beds in nursing homes rather than hospitals. Norway has palliative-care centres at its six main teaching hospitals and lots of community-based provision.
欧洲其他国家各有解决之道。在比利时，家庭医生都接受了缓痛护理培训，但专业临终关怀人员仍很缺乏。在荷兰，养老院都设有两到四个床位的临终关怀室，医院则无此类设置。在挪威，六所主要的教学医院以及许多社区医院均设有缓痛护理中心。

Britain’s National Health Service does better than most at identifying people who may be in the last year of life. Under a plan known as the Gold Standards Framework, such people are given an adviser who assesses their needs and symptoms, asks about their wishes and helps everybody involved to plan for the future.
英国国家卫生局较为成功地遴辨出临终病人。通过一个名为”金标体系”的计划，英国政府为这些患者提供咨询服务，以评估其需要及症状，了解他们的愿望并为其提供协助。

In America, the onus is more on individuals to make prudent financial plans and write living wills (which specify the sorts of intervention that are not desired); there is nothing in American law that stops people expressing such wishes and insisting on their fulfilment. The difference, perhaps, is that most European systems have a clearer default option for those who fall seriously ill with no plans or preferences.
在美国，责任更多落在个人身上。个人需要做好周详的财务规划，并写明遗嘱（其中要注明一旦面临死亡，哪些治疗干预手段不能采用）；美国法律并未禁止公民表达并实现此类愿望。相比之下，欧洲体制的区别可能在于，对于缺乏临终计划的患者，欧洲体制为其设定了较为明确的默认流程。

As the experience of many countries shows, sensible practices come into being only when the population being cared for is large enough to make it worthwhile to keep decent records and devise sound default options. America’s leaders in caring for the very elderly are the Veterans Health Administration (responsible for about 24m old soldiers) and giant health-care providers like Kaiser Permanente, with nearly 9m people on its books.
许多国家的实践证明，这些微妙的手段的产生有其条件，即需要照料的人口达到足够的数量，需要留存详尽的记录，并设计合理的默认流程。在美国，负责照顾年迈人口的最重要机构是退伍军人健康管理局（负责约两千四百万退伍军人）以及像”凯泽永久”这样的医疗服务提供商（其名下有九百万人登记在册。）

For Americans who lack access to such bodies, there is eventually a safety net (whose effectiveness varies between states) for those who are old enough to qualify for Medicare, and poor enough to qualify for Medicaid, another federal programme. Some Americans find they have little choice but to sell as many possessions as possible until they join the ranks of the “dual eligibles”.
对于不享受上述机构服务的人群，他们仍有必要的保障（实际效果依州而异）：要么年纪够大，达到”医疗保险计划” 的标准，要么收入够低，达到”医疗援助计划” （另一个联邦计划）的标准。为了”双重达标”，一些美国人不得不出售财产。

Home is where the heart is
家为心所在

A growing number of infirm and very old people in all rich countries are looked after at home. This often means that someone-almost always a daughter or daughter-in-law-has to leave her job. In general, Europe offers more state support for such informal care givers. Those in Britain get a small state stipend, as well as retirement contributions. Austria and France provide “care holidays”, where a professional helper takes over for a week or two. By contrast, American carers who leave their jobs also forfeit health-insurance and social-security contributions. But in America, too, the lot of care givers may improve as their numbers and political influence grow.
在发达国家，越来越多年老体弱者选择留在家中。这往往意味着有人-一般是女儿或是媳妇-必须放弃工作。对于这些非正式的护理人员，欧洲各国给予了更多的国家支持。英国给予这些人员小额的国家补助，同时他们退休后会获得更多的补贴。奥地利和法国则为这些人员提供”护理假期”，由专业护理人员代工一至两周。与欧洲相反，美国辞工在家的护理人员也免缴医保费及社保费。不过，随着美国这类人员数量及政治影响力的增加，他们的待遇也将有所改善。

For all that, relying too much on care in the family has its drawbacks. Among baby boomers, it was common to have only one or two children. Now many boomers are coping with their elderly parents’ infirmities while fretting at the same time about who will provide their own care as they become frail in their turn.
但过多依赖家庭承担照顾老人的责任有其缺陷。”婴儿潮”中出生的一代往往只有一到两个孩子。如今，这代人已到了供养老人的年纪，而于此同时，他们也为自己老去之时谁来照顾而担忧。

Nursing homes are part of the answer, but palliative-care workers worry about how well these institutions have learnt to look after the chronically unwell. Despite the improvements of the past 20 years, not all nursing homes have accepted basic palliative-care principles. Studies have shown that in many American institutions, residents are poorly treated for pain.
疗养院是一种解决方案，但缓痛护理人员担忧这些机构是否能为年迈体弱者提供专业的服务。尽管过去二十年间人们的观念大大改变，但不是所有的疗养院都接受缓痛护理的理念。根据对美国疗养院的研究表明，缓解病患的疼痛并未获得足够的关注。

Another common gripe about American nursing homes is that their residents are still all too likely to be rushed off to hospital as they begin to die. Some reasons for this are legal: nursing homes are tightly regulated in their use of opium-based pain-killers, and also fear lawsuits if they fail to do everything possible to prolong life. But there are cultural issues too. Nursing homes are staffed by people with a variety of ideas about end-of-life care. By no means all share the live-and-let-die convictions of the hospice movement.
美国疗养院另一个为人所诟病之处在于，当居住在疗养院中的老人濒临死亡之时，疗养院仍忙不迭地将他们送去医院。其中有法律上的缘由：疗养院中含麻醉品止痛药的使用有严格的规定，院方也害怕因未能延续病人生命而惹官司上身。另一个原因则是文化上的。疗养院的工作人员对于临终关怀的理念不尽相同，不可能都接受临终关怀运动者”任病人尽其天命”的理念。

In all rich countries, the movement has some way to go in spreading its message. Palliative-care specialists lament that people with degenerative diseases are not always sent to them: it is still assumed that hospice care is for cancer alone. Another concern is the rising cost of labour. Good palliative care does not rely on expensive technology, but it does need staff to clean, feed and wash people. In Western Europe such work is often done by workers from poorer countries to the east; in the United States, it falls to Hispanic immigrants. But there is no reason to think the supply of such willing hands will be indefinite.
在发达国家，临终关怀理念的推行尚未完成。缓痛护理专家们哀叹仍有很多恶性病患者没有得到缓痛护理，人们仍认为临终关怀院只是为癌症患者所设立。另一个担忧则是劳动力成本的上涨。良好的缓痛护理并不需要昂贵的科技，而需要大量为病人擦洗饲喂的烦琐劳动。在西欧各国，这些工作往往由来自东部贫穷邻国的移民承担。在美国，则由西班牙裔移民承担。但今后是否有足够的劳动力愿意从事这一工作仍难以预料。

Helping people to confront the reality of death is rightly seen as one of the hospice movement’s biggest feats. But on this front too, it still has some way to go. Whether in the earthy, family-minded Mediterranean or the buttoned-up culture of the Teutonic world, men and women hesitate to contemplate the practical details of planning for a messy, protracted demise. Although talking about death is no longer a taboo, dementia and incontinence remain hard to discuss.
临终关怀运动的最大成绩之一就是帮助人们直面死亡。但仍有待继续努力。不论是在世俗的地中海地区，还是在内向的日耳曼世界，人们仍不愿谈论人工延续生命的毫无尊严。虽然谈论死亡已不是禁忌，但人们仍避免谈及老年痴呆或是大小便失禁这些话题。

Workers in palliative care across the world already talk to each other in a very down-to-earth way. But as Dr Lynn says,”we need to start telling the story” to the general public if the movement is to achieve another 40 years of success.
世界各地的缓痛护理工作者已用一种极为实际的口吻去说服旁人。但正如林恩医生所说，临终关怀运动如果想续写过去四十年的成功，就必须”面向大众进行宣传”。

译注：
1. 国际扶轮（Rotary International）是由遍及世界的（在超过200多个国家和地区中有32,000多个）扶轮社（服务组织）组成的国际组织。扶轮社的成员被称为”扶轮社友”（英文”Rotarians”）。该社团组织的宗旨是将那些企业与职业领袖人物们组织起来，提供人道主义服务、鼓励在各种职业中提高职业道德，并在全世界建立善意与和平。国际扶轮社有一个期刊：The Rotarian。社友们每周聚会一次，或是早餐、或是午餐或是晚餐时间。聚餐时间既是社交活动又是一起讨论服务目标的机会。通常都要邀请各种来宾做关于各种课题的演讲。

2. Medicare于1968年7月开始实施，是美国社会保障制度的部份，基本上这是年满65岁老年人的医疗保险、但未满65岁的残障者及长期肾病患者亦可申请。根据联邦保险供款法案(Federal Insurance Contribution Act) ，联邦政府征收税项，税项分为两部份，一是社会保障税，一是医疗保险税。前者的税收与医疗无关，后者是Medicare的财源

3. Medicaid是联邦政府主办及由州政府管理的计划，照顾低收入户的医疗保险补助，由州政府决定低收入审核与补助标准，通常州政府与保险公司签约来处理Medicaid事务，因此计划名称都不相同，例如华盛顿州称为「健康方案Healthy Options」，加州称为「加州医疗Medi-Cal」，其它名称有「社会服务SocialServices」，「公共援助Public Aid」，「人类服务Human Services」，「公共福利PublicWelfare」等

译者：houyhnhnm          http://www.ecocn.org/forum/viewthread.php?tid=13248&extra=page%3D1