大声说误诊
堆在储存柜最底层的那堆“废纸”，陈晓红固执地阻拦任何人扔掉。
那是一叠画满“正”字的表格，每一笔表示一个逝去的生命。
1985年，在白求恩国际和平医院医务部工作的陈晓红，把经手的死亡报告单，画“正”字计数。眼下，白纸早已泛黄，表格里的数据被录入计算机里。71岁的陈晓红再也不用画“正”字计数，只要在计算机里“跑一下”，误诊病历的数据会弹出屏幕。
究竟经手过多少份误诊的病历报告？她记不清具体的数字了，“大约30万份吧。”她见证过梅毒在上世纪70年代消失，又卷土重来，误诊率最高时达到60%，如今，所有医生都认识了它，极少误诊。在《临床误诊误治》杂志当主编时，她把当时少有人知的胃食管反流及其综合征等多种疾病，推到公众眼前。
这是一条少有人走的路。就像攀登一座医学高山，分支众多的专科是从正面拾级而上，而研究误诊则是从背面翻越，同样要经过陡坡和峭壁。如今，退休多年的陈晓红还在向上爬。她已经成为中国研究误诊最多的人之一。
每个医生心里都有片墓地
许多双眼睛在关注着误诊研究：出版社时不时询问陈晓红的研究进度，希望免费出书；程序员也加入研究，敲入编程语言，轻而易举地找到误诊疾病之间的相关性；科技公司找上门来，想和陈晓红合作，将她攒了30多年的误诊病历，作用于临床诊断。
可上世纪90年代初，当她和同伴写好第一版《误诊学》时，却被大大小小的出版社拒绝，“医生都要写经验，你这写的是反面”，更何况，从来没有一本医学书籍以误诊为主题。为了让新书顺利出版，她鼓起勇气，拜访当时的医学“大咖”，请他们帮忙写序。
吴阶平向她敞开了门。这个中国泌尿外科先驱者、两院院士、周恩来的医生，丝毫不掩饰地向初次见面的晚辈坦承他犯过的错误：他曾建议一个慢性前列腺炎患者尝试热水坐浴，没多久病人反馈，不起效果，他追问坐浴的方式，病人回答，“不就是洗洗屁股吗？”
说到这里，向来温和的吴阶平蓦地站起来，提高了声量，“这不是怪我吗，没有说清楚。”
"You have been out of the clinic for many years, why do you remember these little things so accurately?" Chen Xiaohong couldn't help asking.
"This is not a trivial matter." Since then, Wu Jieping will always remind every detail, hoping not to delay the patient's treatment: what kind of basin to use, how much water to add, how to keep adding water, why not to use bathtub or bath instead...
As he recalled, he paced back and forth, and even took on the cause of the misdiagnosis: "The responsibility is not on the youth, but on our old comrades, and we did not pass on the past experience to the youth in time."
In order to support Chen Xiaohong, he notified the medical academicians who could be found in Beijing at that time one by one to participate in the seminar on the publication of the new book, "This is also what I want to do. I am very excited that you have done it."
Qiu Fazu, known as the "Father of Chinese Surgery", received the invitation to the seminar and wrote back, "I apologize for not being invited to the meeting."
Later, he specially made an appointment with Chen Xiaohong to cheer her up, emphasizing that the law of misdiagnosis is worth exploring: some people study criminology abroad, not to teach people to commit crimes, but to avoid crimes; similarly, research on misdiagnosis is not to teach people to misdiagnose, but to reduce and avoid misdiagnosis .
The law of misdiagnosis summarized in that book can now be verified and updated under the repeated calculation of the computer.
However, the original manual calculation of 5,000 misdiagnosed medical records has now expanded to more than 300,000.
"Misdiagnosis" was even pirated, translated into traditional Chinese characters, and popular in Hong Kong and Taiwan. The publishing house wanted to defend their rights, but Chen Xiaohong disagreed - she wanted more people to see this book, even if it was a pirated book.
In 1995, Chen Xiaohong became the editor-in-chief of the journal "Clinical Misdiagnosis and Mistreatment".
At that time, medical disputes began to increase, entangled many doctors.
Admitting a misdiagnosis is tantamount to asking for trouble.
However, a group of old academicians and old doctors, willing to say some harsh words, left the closed works in this magazine.
In the early 1970s, he wrote more than 1.3 million words "Abdominal Surgery", which affected tens of thousands of surgeons at that time.
But after reading the misdiagnosis analysis in the magazine, he took the initiative to write a number of articles reflecting on misdiagnosis and mistreatment, hoping to help young doctors grow rapidly.
Jiang Sichang, one of the founders of modern otorhinolaryngology in China, in his 55th year of medical practice, recalled that he had performed hundreds of surgeries for otosclerosis, and firmly remembered the only one that failed: around 1970, when the operation was about to end , the patient's head suddenly moved, and his hand holding the forceps did not have time to avoid it, pushing a piece of tissue into the vestibule.
The patient can't hear.
He also recalled a 16-year-old boy with a large maxillary sinus fibroid in 1949.
This is an operation that is expected to go well - Jiang Sichang has always been praised by his peers for his quick and accurate operation.
But the boy eventually died on the operating table due to a sudden hemorrhage, and the blood transfusion was not prepared before the operation.
Afterwards, the boy's father took the initiative to comfort Jiang Sichang, "Dean Jiang has failed, so if others do it, the failure is conceivable."
"It irritates me more than scolding me in person." In the days to come, Jiang Sichang will always think of the boy's childish and cute appearance.
He attributed the failure of the operation to the complacency of his youth at the time.
Jiang Sichang exposed several medical errors in his memoirs.
These bloody lessons motivated him to pay attention to and support misdiagnosis research.
A book "Doctor's Choice" written by foreign doctors mentioned that every doctor has a cemetery in his heart.
Every time a patient dies due to a surgical error, a new headstone is added to the cemetery.
Doctors are also ordinary people, and they need to use mistakes to grow and enrich their experience.
Most of the old academicians who have contributed to magazines and are willing to reveal their scars are now dead.
Chen Xiaohong lamented that these "everyones" who have left traces in the history of modern medicine in China rarely mention their achievements when they look back on their medical careers, and they all talk about the mistakes they have made.
Talking about misdiagnosis is about solving problems, not creating them
Today, computers have helped Chen Xiaohong find out many patterns of misdiagnosis.
Doctors in hospitals at all levels may misdiagnose: young doctors misdiagnosed mostly because of inexperience, and they did not expect it to be another disease; old doctors mostly misdiagnosed because they were too experienced and took it for granted.
Misdiagnosis is not that A disease is misdiagnosed as B disease, but A disease can be misdiagnosed as many diseases, and many diseases can be misdiagnosed as A disease.
Different diseases are intertwined with each other, similar symptoms may lead to many diseases, and the clinical manifestations of common diseases are becoming more and more hidden and individualized.
To make matters worse, today, doctors have less time to make a diagnosis.
Many senior doctors interviewed mentioned this point invariably.
Patients who are sent to the emergency room sometimes die before they can be diagnosed.
Doctors must compete against the disease against time, learn to diagnose decisively, and must diagnose correctly, otherwise it is easy to attract lawsuits.
A dental patient in his 60s, who had filled his teeth many times, still had a toothache. In the end, he had to ask the doctor to pull out the bad tooth.
The doctor did an electrocardiogram on him before the tooth extraction, and found that his toothache was not related to bad teeth, but an old myocardial infarction.
Chen Xiaohong found that the clinical manifestations of patients with acute myocardial infarction can be stomach pain, shoulder pain, back pain, toothache and so on.
In 2000, she called on the misdiagnosis and mistreatment seminar that when doctors found that the patient had these symptoms, they could do an electrocardiogram for the patient.
Having plunged into misdiagnosed cases for more than 30 years, Chen Xiaohong decided to be a person who reminds clinicians, "Don't let the diagnosis take a detour."
Sometimes bad news excites her more than good news.
In 2008, she heard that there were 17 medical disputes in Sichuan caused by the death of patients due to pulmonary embolism, and the attribution of responsibility should be determined through autopsy.
She immediately pushed the editor to go on a business trip, went to the local area to verify the information, and published the manuscript as soon as possible, "The autopsy rate in my country is too low, and every autopsy case is particularly valuable."
A new disease emerged, and she and her colleagues followed closely.
In 2015, doctors from Peking Union Medical College Hospital sent an article to count 30 cases of anti-NMDA receptor encephalitis diagnosed and treated from 2011 to 2014. The misdiagnosis rate of initial diagnosis in other hospitals was as high as 100%.
This is a new disease that few people know about.
The disease was first reported worldwide in 2007.
This article quickly attracted the attention of the editorial board - it must be published immediately to remind other doctors to pay attention.
Slowly, hospitals around the world continued to publicly share relevant diagnosis and treatment experience and misdiagnosed cases, and doctors’ awareness of sending inspections became stronger. By 2021, the First Affiliated Hospital of Zhengzhou University announced 121 patients diagnosed with anti-NMDA receptor encephalitis, only 43. people have been misdiagnosed.
A few years earlier, Academician Wang Zhonghao studied gastroesophageal reflux syndrome and found that this disease has been misdiagnosed for a long time, and it is scattered in the departments of respiratory, cardiovascular, ENT, and dentistry.
This discovery forced the editorial department to open a special topic "Focus on Gastroesophageal Reflux Disease" on the website, and "shout out" Academician Wang's research.
In the editorial department, whenever a good article is encountered, the editor will always read it out loud and share it with colleagues.
A patient who was not well regarded by a large hospital in the southwest region went to a county hospital in Gansu and was immediately diagnosed with kala-azar, which is a local endemic disease.
Some tertiary hospitals diagnose epidemic hemorrhagic fever, and the misdiagnosis rate is higher than that of first-level hospitals, because doctors in first-level hospitals are more often exposed to farmers bitten by rats.
Every endemic disease deserves attention.
In the early years, the editorial department rarely received submissions from Xinjiang.
Chen Xiaohong was in a hurry, so she contacted a doctor in Xinjiang and invited the doctor to contribute.
Slowly, more and more manuscripts came from Xinjiang.
来自全国各地的投稿人，绝大多数是临床一线医生。陈晓红分析，相比基础研究，大多临床医生更容易接触误诊案例，一旦刊登稿件，对医生的职称评定有帮助。也有医生在投稿时说，专家审稿的建议，能帮助他更深刻地认识他的错误，避免再犯。
为了提高稿件水平，上世纪90年代中期，陈晓红把白求恩国际和平医院各个专科最资深的退休主任，聘到编辑部，共同评审从全国各地寄来的投稿。
那些在临床上干了大半辈子的老主任，对这个新任务兴致勃勃。有人常常一边读稿一边嘟囔，“我在临床时见过这个案例”；有人看到投稿写得乱，忍不住上手逐句修改；还有人读着读着就拍桌而起，“这简直是草菅人命！”
有时遇到连他们也没见过的案例，老主任们会一遍遍讨论，翻书，找答案。编辑部的几个大书架，很快塞满了最新的医学书。
许多医生说，误诊在推动着医生，进一步认识人类的身体。其实，《临床误诊误治》的创刊人冯连元，最初也是为了汲取同行的误诊经验，才创办了杂志。当时，中国消化病学奠基人张孝骞支持了他的想法，但也提出担心，“这个名字会不会惹事？”
思前想后，冯连元提出解决办法：文章隐去患者、医生的名字，并适当修改一些无关紧要的细节，以免暴露患者的个人信息。“办这个杂志，是要解决问题，而不是制造问题。”
误诊是系统性难题
30多年过去了，现代医学在精进：机器人取代了人，看CT影像；3D打印能打印出人体组织；以往，手机影响心脏起搏器工作，但现在两者直接相连，手机追踪患者心脏健康……但误诊依然每天在临床上发生。
北京大学人民医院呼吸科医生何权瀛认为，要解决误诊，是系统性工程。一方面，人类所掌握的医学知识越来越多，越来越深，医学院的学制从5年制变为6年制，再增加到8年制，但医学生到了临床，依然感觉知识不够用。医学专科越分越细，许多医生只专注研究一个专科的其中一种病，当患者有多种疾病，就容易漏诊。
“就像用钻打洞，越钻越深，最后，看不见洞旁边的地方。”何权瀛比喻。
He has studied sleep apnea for more than 20 years and found that the disease may lead to coronary heart disease, high blood pressure, diabetes and other diseases.
During the consultation, he likes to draw a picture for the patient, list various diseases on the paper, ask the question to the bottom, and then find the relationship between each disease.
But some patients are reluctant to answer too many questions, "You doctor is so annoying, it's over if you give me medicine."
Distrust between doctors and patients is one of the reasons for misdiagnosis.
Some unmarried women have stomachaches and deliberately conceal their personal sexual history from the doctor, leading the doctor to find the wrong cause, but did not expect it to be an ectopic pregnancy.
Sometimes the consequences of delaying treatment can stay with these women for the rest of their lives—cutting out half of their fallopian tubes is equivalent to halving their chances of conceiving.
Patients can now obtain medical knowledge from various channels, but He Quanying believes that the level of public health knowledge is still insufficient, and more importantly, patients are not as tolerant as in the past and allow doctors to misdiagnose.
This has also resulted in a reduction in the autopsy rate. When family members find misdiagnosis through autopsy reports, they often sue the hospital.
In the past few years, the editorial department of "Clinical Misdiagnosis and Mistreatment" has welcomed several groups of uninvited guests every year-patients are holding a stack of medical records, hoping that the editorial department will help to evaluate the reasoning, "You judge, are we misdiagnosed?"
Chen Xiaohong concluded that this attitude stems from knowledge asymmetry.
When the patient is lying in bed for examination, he is looking up at the doctor; but when the doctor cannot understand the disease or make a judgment, he is also looking up at the mysterious and complicated medical universe.
Misdiagnosis research is a companion in medical development.
The development of inspection technology once helped doctors make correct judgments, but Chen Xiaohong found that over-reliance on inspection machines has become an emerging cause of misdiagnosis.
In the past 30 years, the concept of misdiagnosis has gradually become larger, and the requirements for doctors have become stricter.
In the past, doctors only misdiagnosed a disease when they made a wrong diagnosis. Today, even if the diagnosis is correct, but the treatment and medication are inappropriate, or the initial diagnosis is wrong, it is also a misdiagnosis.
The World Health Organization has announced that the average misdiagnosis rate in clinical medicine is 30%, and 80% of medical errors are caused by mistakes in thinking and cognition.
According to the misdiagnosis literature collected by Chen Xiaohong, the misdiagnosis rate in the literature has remained at about 30% in the past 30 years, and has not decreased significantly, but the misdiagnosis rate in the literature does not represent the real misdiagnosis rate.
"It is difficult to calculate the accurate clinical misdiagnosis rate." He Quanying explained that the autopsy rate of clinical deaths in my country is low, and autopsy is the best and most accurate way to detect misdiagnosis.
What's more, there is no uniform standard for calculating the misdiagnosis rate today.
Feng Lianyuan, who started a journal in order to gain experience in the era of information occlusion, has now worked in clinical practice for nearly 40 years and has accumulated enough experience.
But he found that even with experience, misdiagnosed.
For common diseases, doctors need to use medicines and treatments according to the corresponding diagnosis and treatment guidelines, but the standards in the guidelines cannot completely match each patient.
For example, according to the guidelines, patients with gas poisoning should be infused with 200 mg of niacin, but Feng Lianyuan has encountered an experience beyond imagination: 2000 mg of niacin, 10 times the guideline, was used to save the patient.
There is also a patient in Shanghai who has had a headache for a month and hopes to lower his blood pressure, but his high pressure is 115 and his low pressure is 75, which are within the normal range.
Several hospitals refused to prescribe him antihypertensive drugs.
Feng Lianyuan asked and found that the patient's blood pressure was lower than the normal blood pressure of ordinary people all the year round, so he broke the guidelines and prescribed antihypertensive drugs.
The patient's headache gradually eased.
Going beyond the guidelines for medication is an extremely test of the doctor's courage.
Today, in order to avoid excessive medical treatment, the system can automatically identify the amount of medicine a doctor has taken, and if it is found to exceed the guidelines, the doctor will be fined.
Moreover, once a medical dispute occurs, the attribution of responsibility will be determined according to the guidelines, and the doctor must explain clearly, why not prescribe drugs according to the guidelines?
Feng Lianyuan concluded that the formulation of the guidelines is a great progress, setting standards for doctors across the country, but the appropriate dosage of medication for each person is different, and individual differences must be understood.
"It's like putting 100 screws into screw holes, some screws have to be backed up with paper to fit accurately," he said.
Therefore, Feng Lianyuan, who has been retired for many years, is still studying misdiagnosis.
He cited mathematical models, made up for inaccuracies, and found the piece of paper that was holding the screws.
Doctors sit together regularly and correct themselves
For some years, Meng Qingyi would appear on the podium of the 301 Hospital as the chief physician to give the first lesson.
Sitting at the bottom are advanced doctors from all over the country, all of them are technical experts who "stomp their feet three times" in the local hospital.
His first lesson was about misdiagnosis.
He didn't talk about those high-level intractable diseases, but started from the stories of "misconceptions" in daily clinical work.
After an elderly man went to bed at night, his family couldn't wake up, so he was sent to the emergency room overnight.
The doctor judged that he must be seriously ill in a coma, so he ordered various examinations, and urgently called a doctor who only worked during the day for MRI examinations, but could not find the cause.
Until 6 am, the old man woke up suddenly and looked at the doctor facing him with a surprised expression, "Why am I here?" It turned out that he just took two tranquilizers.
He also gave an example that fever patients during the high-incidence period of influenza are easily misdiagnosed as influenza.
In fact, the patient may have other diseases, such as urinary infection, meningitis, tetanus attack and so on.
He still remembers that, in 1994, when he graduated with a doctorate and just entered the emergency department, a young man in a coma came to the emergency department.
The doctor spent more than 4 hours doing various examinations, but still could not find the cause of the coma. Finally, an expert from the hyperbaric oxygen department was invited from an outside hospital to know that the patient was poisoned by carbon monoxide.
He later read from an English book, "Young patients in non-traumatic coma, first consider poisoning." These experiences finally played a role in later work.
"Doctors need to be alert at all times and keep asking themselves questions. Why is this behavior? Will it be misdiagnosed?" He described that doctors' work status is like walking on thin ice, and they must force themselves to break through clinical thinking and cognition.
This course later became the ace class.
He often hears complaints from patients, "This disease was not diagnosed in the county hospital. You will know why when you come here." Meng Qingyi explained to his colleagues, "The doctors in the county hospital are not poor, and your disease has no symptoms in the early stage." , and his correct diagnosis is based on the mistakes of the predecessors, and the diagnosis of the predecessors cannot be belittled.
There are still many mysteries in the medical field waiting to be solved.
Meng Qingyi has been researching difficult diseases for many years, and he has encountered some diseases that are "unreliable". They are neither like existing diseases, nor belong to a certain specialty, nor are they recorded in any medical books at home and abroad.
In many cases, the fight against such diseases requires a series of failed attempts before finally winning.
At Peking University People's Hospital, every two months, a group of doctors gather to share the "puzzles" encountered in clinical practice.
Doctors from various hospitals took turns to come to power and tell the truth about the difficult cases they had experienced.
They are also open to peer scrutiny as they share their experiences.
For difficult cases, how to find the final answer.
In this process, there are also some cases where the initial diagnosis was missed, or there was a phenomenon of seeing the trees but not the forest.
Mi Yuhong, director of the Emergency and Critical Care Center of Beijing Anzhen Hospital Affiliated to Capital Medical University, is a frequent participant of this seminar.
They also sometimes have serious discussions about deaths.
Even nitpicking, analyzing the details of the entire diagnosis process, and investigating whether there are imperfections?
Or, where can you do better next time?
This ability to self-correct is too important for emergency physicians.
米玉红研究了17年肺栓塞，接触过至少上千位肺栓塞的患者，每一个患者的临床表现都不同，绝不止指南里提到的症状。更重要的是，在急诊科，主动脉夹层、肺栓塞、急性心肌梗死这三种致命性急症的临床表现相似，相互独立，有时又互为因果，极其容易混淆、误诊。这三种疾病的治疗方法又是背道而驰的，更是考验急诊医生的决断力、经验和医学功底。
这样的研讨会至今已经办了60届，吸引了北京各大医院的急诊科医生，如今还有专科医生参与。他们定期坐在一起，没有藩篱地讨论彼此的误诊经历，并在日后极力避免。
米玉红记得，有一次，一个医生在讲台上提到一个病例，患者此前曾在北京某家医院就诊，而后转院才得到确诊。下台后，这个医生平静地走到她面前，轻声提醒，“刚刚说的(误诊)，是你家的医院。”
让医生敢说
敢于面对误诊、漏诊的医生不少，但敢于开口的医生是少数。米玉红曾给《临床误诊误治》杂志投稿，写她在急诊接触一位右上肺动脉缺如的病人，初诊被误诊为肺栓塞的过程。推动她大胆公布的动力是，她对自己专业水平有自信，想借此机会，提醒同行，“我研究肺栓塞17年，我知道急诊圈里，大家共同的难点在哪？”
但对于那些更年轻的医生，公开谈论误诊需要极大的勇气。事实上，哪位年轻医生不是在上级医师或主任不断纠错中成长起来的呢？
孟庆义理解年轻医生的顾虑。对年轻医生来说，发生误诊是件很痛苦的事，会感觉沮丧，“过去，大专家发现年轻医生误诊，发脾气，可是会摔病历夹的。”但慢慢地，年轻医生经验多了，脸皮厚了，不用主任提醒，自己就会去翻书。
孟庆义强调，绝大多数误诊不造成后果。这与陈晓红的误诊研究结论相似，在过去30年的误诊病历里，大多数误诊不会对患者造成影响，只有极少数致死致残。
但大多医生更愿意关起门来，在行业内讨论误诊，“这毕竟(对病人)不是一件好事”。
出于良知，何权瀛愿意公开发声，做沟通公众和医学界的桥梁。他发现，最近几年，极少有官员或医生愿意公开讨论误诊，而误诊误治也没有纳入衡量医生和医院水平的标准。
"Misdiagnosis has become a topic that is often discussed and avoided." He Quanying said that the medical profession should not hide their ears and steal the bell. For fear of getting into a lawsuit and affecting their reputation, they ignore and do not mention misdiagnosis, which will affect the public's attention and understanding of misdiagnosis.
This atmosphere of avoidance also affected Chen Xiaohong's research.
She once established the Misdiagnosis and Mistreatment Research Association in 1999, which was supported by many academicians, but later, some people worried that the name would cause trouble and changed it to "Medical Quality Research Association".
In the early years, publishing papers in medical journals could help doctors evaluate professional titles. This time, Chen Xiaohong did not worry about lack of manuscripts.
At that time, an insider commented that other medical journals were mouse journals and rabbit journals, and only "Clinical Misdiagnosis and Mistreatment" was talking about people.
However, in recent years, the standards for evaluating medical journals have changed, and basic research and topical research are more likely to be valued.
In the journal "Clinical Misdiagnosis and Mistreatment", there are fewer and fewer articles related to misdiagnosis, and the number of pages is getting thinner and thinner.
Chen Xiaohong began to focus her research on misdiagnosis big data research, and she was reluctant to let go of misdiagnosis research.
She saw that there are still more than 3,000 misdiagnosed documents published on major platforms every year. "If I don't do it, these precious articles will die. They need someone to wake up and collect them."
Some doctors introduced their own misdiagnosis stories on short video platforms.
Chen Xiaohong excitedly called for the young people in the team, "How do I get this medical record down?" Her latest worry is that the literature records relatively lagging cases, and some doctors even wrote it a few years ago or ten years ago. Cases, "too old" to keep up with current medical developments.
The only solution she thought of was to encourage more doctors to speak up and share clinically misdiagnosed cases bravely and sincerely.
Only in this way can the latest misdiagnosis cases be collected widely and promptly.
Chen Xiaohong is still walking on this road that few people take.
She doesn't feel lonely at all.
She recruited a group of young people, including not only medical students, but also computer programmers.
The brightest place she can see in front of her is when the doctor receives a consultation, and she can use the misdiagnosis medical records and rules she has accumulated for more than 30 years at any time.
Those who support her also include a Malaysian Chinese doctor.
He opened a small clinic and subscribed to the magazine since 1998.
A few years ago, he made a special trip to find Chen Xiaohong, hoping to buy and use this database.
即便到了现在，医学界依然在“误诊有没有学”方面有争议。有的医生坚持误诊无学，只是医生零散的临床经验总结，“不是所有现象都叫科学”。但孟庆义却认为，误诊的规律是复杂、高深的，教科书写不出来的，一些专科医生也无法提炼，必须用物理、化学、心理等其他学科的思维去思考误诊。
“误诊是高级学问。”孟庆义说，它应该成为医学研究那颗皇冠上的明珠。
中青报·中青网记者 魏晞