A damp patch above Daljit’s bed had slowly spread across the ceiling, turning yellow, then brown. In the depth of winter, he wore two pairs of socks, a jumper, and his coat to bed. A puff of vapour appeared each time he exhaled. He shared the bedroom with five other men. There was no window to throw open to ventilate the room with fresh, crisp air and odours lingered. Daljit continued his work in construction, despite his wet, hacking cough. His previously muscular arms had been replaced by the twigs of a bare winter tree and he struggled to lift the bricks. As the apartment block he was building grew taller and shinier on the skyscape of this ever-expanding city, his body diminished.
Daljit 床上方的一块潮湿的斑点已经慢慢蔓延到天花板上，变成黄色，然后变成棕色。隆冬时节，他穿着两双袜子、一件毛衣和外套上床睡觉。每次呼气都会冒出一团水汽。他与另外五个男人同住一间卧室。没有窗户可以打开让房间通风，空气清新，气味挥之不去。达尔吉特继续他的建筑工作，尽管他咳嗽得很厉害。他以前肌肉发达的手臂已经被一棵光秃秃的冬天树的树枝所取代，他挣扎着举起砖头。随着他正在建造的公寓楼在这座不断扩张的城市的天空景观中变得越来越高、越来越闪亮，他的身体却越来越小。
When he had coughed that morning, the contrast of the crimson haemoptysis against the white of the sink basin had startled him. Dark circles under his eyes betrayed the nocturnal rattling cough that disturbs his rest. There was so little subcutaneous fat covering his skeleton that his clavicles jutted out and his ribs protruded. The sputum smear was positive. I explained the diagnosis of tuberculosis and the treatment. I repeated phrases that I had said many times before: “it is very important that you take the medications every day”, “tuberculosis is curable”, and “tuberculosis care and treatment are free”. Daljit asked me the question that matters most to him: “Doctor ma’am, when can I work?” The diagnosis of tuberculosis meant Daljit’s landlord and boss did not allow him to return to work or his room. There was no job contract and no rental agreement. Daljit paid cash weekly to the landlord, and without work, he had no money for rent. One of Daljit’s roommates packed his possessions and dropped them off at the hospital—a lifetime of belongings fitted into a small carry-on suitcase. An overstayed visa and therefore no recourse to public funds meant endless paperwork for our tuberculosis team to secure a hostel bed for Daljit.
那天早上他咳嗽时，深红色的咯血与白色的洗脸盆形成鲜明对比，吓了他一跳。他眼底的黑眼圈出卖了夜间打扰他休息的咳嗽声。他的骨骼上覆盖的皮下脂肪太少，以至于他的锁骨突出，肋骨突出。痰涂片呈阳性。我解释了肺结核的诊断和治疗。我重复了我说过很多次的话：“每天吃药很重要”，“结核病是可以治愈的”，“结核病护理和治疗是免费的”。Daljit 问了我一个对他来说最重要的问题：“医生女士，我什么时候可以工作？”肺结核的诊断意味着 Daljit 的房东和老板不允许他返回工作岗位或他的房间。没有工作合同，也没有租赁协议。Daljit 每周向房东支付现金，没有工作，他没有钱付房租。Daljit 的一位室友收拾好他的财物，然后将它们送到了医院——一个随身携带的小手提箱里装了一辈子的财物。逾期居留的签证，因此无法求助于公共资金，这意味着我们的结核病团队需要无休止的文书工作，才能为 Daljit 获得宿舍床位。
Ahmed, our hospital’s tuberculosis outreach support worker, now visits Daljit in his hostel and watches him swallow the tuberculosis medications daily. Daljit has no savings. All the money from his job was sent home to his wife and children in India. Ahmed shows Daljit how to access the langar (community kitchen) at the local gurdwara to get his meals. The langar is run by Sikh community volunteers. Early each morning before the sun rises, elder Punjabi women knead and roll dough to make the chapatis that Daljit eats with dahl. A month passes. Daljit gains weight and strength and finds another construction job. Cash is paid directly into Daljit’s hands, to cross seas and lands to fill his children’s stomachs and futures.
我们医院的结核病外展支持人员艾哈迈德现在去 Daljit 的宿舍看望他，每天看着他吞下结核病药物。Daljit 没有积蓄。他所有的工作收入都寄给了他在印度的妻子和孩子。艾哈迈德向 Daljit 展示了如何进入当地 gurdwara 的 langar（社区厨房）取餐。langar 由锡克教社区志愿者经营。每天清晨，在太阳升起之前，年长的旁遮普妇女揉搓面团，制作达尔吉特 (Daljit) 和达尔 (dahl) 一起吃的薄煎饼。一个月过去了。达尔吉特体重和体力都增加了，并找到了另一份建筑工作。现金直接交到达尔吉特手中，漂洋过海，填饱孩子们的肚子和未来。
The patients Ahmed supports are socially vulnerable and have complex needs. Ahmed visits Patrick in his apartment to watch him swallow his tuberculosis medications. A year ago, tuberculosis pericarditis had squeezed Patrick’s heart, requiring emergency drainage, and tiny ring-shaped tuberculomas had developed in his brain. Empty bottles of vodka and crumpled beer cans are strewn around the room and Patrick sits slumped in front of the television. Ahmed takes a black bin bag and clears the surfaces of the debris. The refrigerator is empty apart from a loaf of mouldy bread, a green fuzz creeping across its surface. The next day, Ahmed brings Patrick a bag of groceries filled with fresh fruits, milk, and bread. Patrick swallows his tuberculosis medications and takes a gulp of beer to wash them down. He tells Ahmed that if he stops drinking completely the shakes and sweats and spiders crawling all over his body will come.
艾哈迈德支持的患者在社会上处于弱势地位并且有复杂的需求。艾哈迈德去帕特里克的公寓看他吞下结核病药物。一年前，结核性心包炎压迫了帕特里克的心脏，需要紧急引流，他的大脑中长出了微小的环形结核瘤。伏特加空瓶和皱巴巴的啤酒罐散落在房间各处，帕特里克瘫坐在电视机前。艾哈迈德拿起一个黑色垃圾袋，清理表面的碎片。冰箱里空无一物，只有一条发霉的面包，表面爬满了绿色的绒毛。第二天，艾哈迈德给帕特里克带来一袋杂货，里面装满了新鲜水果、牛奶和面包。帕特里克吞下了他的结核病药物，然后喝了一大口啤酒将它们冲洗干净。他告诉艾哈迈德，如果他完全停止饮酒，就会出现颤抖、出汗和爬满全身的蜘蛛。
Ahmed accompanies Patrick on the bus to his clinic appointment. The recent MRI shows the tuberculomas have resolved and I am pleased to report to the public health authorities that he has completed treatment. The MRI had also revealed Patrick’s shrunken brain from decades of alcohol use. He promises again to attend sessions at the community addiction clinic. A year of treatment is complete and our team say our farewells to Patrick, with the unsaid awareness that if the tight grasp of alcoholism continues, an early death is likely.
艾哈迈德陪帕特里克坐公共汽车去他的诊所预约。最近的 MRI 显示结核瘤已经痊愈，我很高兴地向公共卫生当局报告他已经完成治疗。MRI 还显示帕特里克因数十年饮酒而萎缩的大脑。他再次承诺会参加社区成瘾诊所的课程。一年的治疗已经结束，我们的团队向帕特里克告别，但没有说出的是，如果继续严格控制酒精中毒，很可能会早逝。
November is the most miserable of months in the UK. No sunrise emerges from the dark and icy morning to bring light to the day. Ahmed visits the park to watch Dhillon swallow his tuberculosis medications daily. Their meeting place is the third bench after the entrance gate. Dhillon’s lungs were almost obliterated by the combination of tuberculosis and years of smoking heroin and street living. Ahmed has a flask of hot shaah, Somali spiced tea with milk, and pours a mug for Dhillon. Dhillon’s fingers clasp the mug, finding comfort in its heat. Dhillon smiles at Ahmed, the few teeth remaining in his mouth brown with decay. Dhillon holds a pizza box he had found in the bins in the alleyway behind a row of restaurants. Grease soaks through the square cardboard box and with a few mouthfuls of an already half-eaten pizza Dhillon’s burning epigastric hunger pangs wane. Dhillon’s usual sleeping spot is under the railway arches, offering some protection from the rain and wind. He has collected cardboard to layer with newspaper to form a makeshift mattress. He shivers himself to sleep and is usually woken by the loud beeping of a garbage truck reversing, his alarm clock to meet Ahmed and swallow his tuberculosis medications.
十一月是英国最悲惨的月份。没有日出从黑暗和冰冷的早晨出现，为这一天带来光明。艾哈迈德每天都会去公园看 Dhillon 吞下他的肺结核药物。他们的会面地点是大门后的第三张长椅。Dhillon 的肺几乎被肺结核和多年吸食海洛因和街头生活相结合所摧毁。艾哈迈德端着一瓶热 shaah，索马里加牛奶的五香茶，并为 Dhillon 倒了一杯。Dhillon 的手指紧握着杯子，在它的热度中找到安慰。Dhillon 对艾哈迈德微笑，他嘴里剩下的几颗牙齿因腐烂而变成褐色。Dhillon 拿着他在一排餐馆后面小巷的垃圾箱里找到的披萨盒。油脂浸透了方形纸板箱，Dhillon 咬了几口已经吃了一半的比萨饼，上腹燃烧的饥饿感逐渐减弱。Dhillon 通常睡觉的地方是在铁路拱门下，提供一些防雨和防风的保护。他收集了硬纸板，用报纸叠起来制成临时床垫。他颤抖着入睡，通常是被一辆倒车的垃圾车发出的响亮的哔哔声吵醒，他的闹钟是与艾哈迈德会面并吞下他的肺结核药物。
Other patients our team supports face different challenges. Aisha had put the back pain down to sitting for the whole day in a cramped lecture theatre and evening shifts standing in the food packing factory. She took increasing capsules of ibuprofen to get through daily life. Aisha could not miss any of her university lectures; her parents had dug themselves into a trench of debt to pay for her education. An excruciating stabbing pain in her back and bedclothes soaked with sweat disturb Aisha’s sleep. As I examined Aisha’s spine, she cried out in pain when I palpated a kyphosis of the thoracic spine, the gibbus deformity from the destruction and collapse of a vertebral body. Treatment is started and a brace provided to hold Aisha’s spine still. The diagnosis of spinal tuberculosis remains hidden from Aisha’s parents; she refuses to cause them the anxiety of an unwell child thousands of miles away and alone, and instead fakes stories of her happiness in telephone calls with her mother. Without the factory work, Aisha’s money does not stretch far enough to cover the bus fare to the hospital and food. Ahmed visits Aisha to watch her swallow the medications. The tuberculosis nurses have reached into their pockets and pooled together some cash that Ahmed gives to her for some relief from the financial strain of keeping her body nourished and staying alive.
我们团队支持的其他患者面临着不同的挑战。艾莎把背痛归咎于整天坐在狭窄的演讲厅里，晚上轮班站在食品包装厂里。她服用越来越多的布洛芬胶囊来度过日常生活。艾莎不能错过她的任何大学讲座。她的父母为了支付她的教育费用而负债累累。背部剧烈的刺痛和被汗水浸透的床单扰乱了艾莎的睡眠。当我检查艾莎的脊柱时，当我触诊到胸椎后凸畸形，即椎体破坏和塌陷导致的隆凸畸形时，她痛得大叫起来。开始治疗，并提供支架以固定艾莎的脊柱。脊柱结核的诊断结果一直瞒着艾莎的父母；她拒绝让他们像一个身处千里之外、独自一人、身体不适的孩子一样感到焦虑，而是在与母亲的电话中虚构她的幸福故事。没有工厂工作，艾莎的钱不够支付去医院的公交车费和伙食费。艾哈迈德去看望艾莎，看着她吞下药物。结核病护士已经掏出自己的口袋，汇集了艾哈迈德给她的一些现金，以减轻她保持身体营养和维持生命的经济压力。
Directly observed treatment for tuberculosis involves a health-care worker, or other trained community member, watching as an individual takes their medication. The aim of this form of drug administration is to promote adherence by ensuring that the person takes all prescribed medications and to monitor the response to treatment. Directly observed therapy is considered an integral part of enhanced case management for individuals with tuberculosis from underserved groups. However, as Professor of Sociology Paul Draus comments: “One might […] wonder why any adult would need to be watched in order to properly take the medicine that they need to save their lives and protect those around them”. The original public health control strategy of tuberculosis care that included directly observed treatment as just one aspect of managing tuberculosis was hijacked by the paternalistic concept of watching adults swallow tablets. As clinicians, we ask our patients to trust us with their health and then suggest directly observed treatment, tipping the scale so the imbalance of power lies firmly with us. The control no longer relates to tuberculosis in the community, but control of the individual. Despite endorsement by WHO, if clinicians follow the evidence, directly observed treatment does not provide a solution to the challenge of adherence. Our patients’ stories reflect that the barrier to adherence and getting through tuberculosis treatment is the pain of poverty and the absence of a social safety net. Yet across the globe, thousands of people with tuberculosis are watched as they swallow tablets each day.
直接观察的结核病治疗包括医护人员或其他受过培训的社区成员在患者服用药物时进行观察。这种给药形式的目的是通过确保患者服用所有处方药并监测对治疗的反应来促进依从性。直接观察治疗被认为是加强对来自服务欠缺群体的结核病患者病例管理的一个组成部分。然而，正如社会学教授 Paul Draus 评论的那样：“人们可能 [...] 想知道为什么任何成年人都需要被观察才能正确服用他们需要的药物来挽救他们的生命并保护他们周围的人”。结核病护理的原始公共卫生控制策略将直接观察治疗作为结核病管理的一个方面，但被观看成人吞咽药片的家长式观念所劫持。作为临床医生，我们要求患者相信我们的健康，然后建议直接观察治疗，倾斜天平，让权力的不平衡牢牢掌握在我们手中。控制不再涉及社区的结核病，而是针对个人的控制。尽管得到了 WHO 的认可，但如果临床医生遵循证据，直接观察治疗并不能解决依从性挑战。我们患者的故事反映出坚持和完成结核病治疗的障碍是贫困的痛苦和缺乏社会安全网。然而在全球范围内，每天都有成千上万的肺结核患者被观察到吞下药片。
Tuberculosis consumes bodies and interrupts lives. Health professionals prescribe tuberculosis treatment on charts, but cure is only possible if the medications are combined with sensitivity to the suffering of others. Directly observed therapy is not merely the act of witnessing tablets being swallowed. It is a treatment approach that shows compassion and respect, and recognises the basic human needs of food and warmth. Directly observed therapy is standing alone in a big, grey city, and someone handing you a cup of hot shaahon a cold day.
结核病消耗身体并中断生命。卫生专业人员在图表上开出结核病治疗处方，但只有将药物与对他人痛苦的敏感性相结合，才有可能治愈。直接观察治疗不仅仅是见证药片被吞下的行为。这是一种表现出同情和尊重并认识到人类对食物和温暖的基本需求的治疗方法。直接观察疗法是独自站在一个灰色的大城市里，有人在寒冷的日子里递给你一杯热的 shaahon。