How can cancer patients and their families seek medical advice smartly?
China News Weekly reporter/Peng Danni
Issued in the 994th issue of China News Weekly on May 5, 2021
From local hospitals to folk remedies, to the top three in Beijing and Shanghai, the experience of Ma Jincang's family seeking medical treatment from a distant county town on the Qinghai Sea to a big city was a journey of confusion in China's medical system.
They originally gave this hope to Lu Wei, a doctor at Shanghai Xinhua Hospital, but after about half a year of treatment, Ma Jincang died.
"No disease is more uncertain than tumors. This uncertainty not only brings huge challenges to the survival time of cancer patients, but also makes patients and their families suffer huge challenges when facing diagnosis and treatment decisions. The test of the disease.” Yang Yong, chief physician of the Department of Oncology and Urology at Peking University, recently published in "Uncovering the "Shadow" of Cancer, How Do Patients Adopt Diagnosis and Treatment Decisions?"
"The beginning of the article is clear.
It is not because of medical backwardness. On the contrary, the various solutions brought about by the tremendous progress of the biomedical industry in the past two decades, as well as the huge differences in tumor diseases, have exacerbated the difficulty of such decision-making.
So far, tumor treatment is the fastest growing category in all clinical medicine.
In academic journals in the medical field, nearly half or more of academic journals are reporting the latest developments and discoveries of tumors and related diagnosis and treatment.
Its explosive growth of knowledge even poses a challenge to doctors' self-learning.
Although modern medicine still cannot cure many tumors, when cancer is gradually moving towards a controllable chronic disease, in the long-lasting anti-cancer process, for millions of cancer patients and their families, how to seek medical treatment scientifically and find more Trustworthy doctors need to learn to make better decisions and remain rational in the process of seeking medical treatment.
How to find the right hospital and doctor
After the Wei Zexi incident, the medical bidding ranking of search engines has been widely condemned, but today, in the information jungle of the Internet, it is still possible to get lost everywhere.
In this regard, the popular science writer Ice Ball, who is a doctor of clinical medicine at Yale University and is now the chief physician of internal medicine in the United States, suggested that patients and their families should consult medical science popularization done by professional institutions as much as possible.
The ranking of hospitals also has some reference value. The difference between the top five and the top ten, or even the top twenty hospitals in the ranking is difficult to say, because the indicators behind the ranking are complex and some are not even scientific. However, the ranking is There must be a gap between the top five hospitals and the top 100 hospitals.
Xinhua Hospital affiliated to Shanghai Jiaotong University School of Medicine, where Ma Jincang's family visited, ranked 47th among general hospitals in China according to the Fudan edition of the "2019 Chinese Hospital Rankings", and ranked 11th in Shanghai, which is full of large hospitals, which is not outstanding.
The most advantageous department of this hospital is pediatrics, and Lu Wei's general surgery department is not the superior department of the hospital.
For the Ma family, perhaps they should choose a hospital that specializes in cancer treatment.
Due to the large number of cancer patients in such hospitals, the divisions are more detailed and the level of doctors is higher.
In general hospitals where the number of cancer patients is relatively small, general surgeons will generally treat patients with digestive system cancers such as thyroid cancer, breast cancer, stomach cancer, and bowel cancer.
The new media of oncology popularization "Pineapple Factor" once wrote that a major pain point of domestic medical treatment is that there has never been a "one-stop" solution.
Each hospital has its own expertise, and each department has its own advantages. For cancer patients who lack medical knowledge, it is like seeing the flowers in a fog, and most of the doctors will not waste a lot of words, explaining to the patients and giving pointers. Maze.
Because the resources of Chinese hospitals are not transparent, families of cancer patients need to play the role of "public relations" to understand, be familiar with, and obtain first-hand information.
Ma Jia found Lu Wei through a certain medical application platform.
On this medical platform, Lu Wei has 16 votes in the past two years. All of these evaluations are "very satisfied with the curative effect". Only one patient marked "fair" in the "attitude" column.
Ma Rong also gave a good comment and wrote in the comment area: stick to treatment, listen to the doctor, hope a miracle will happen, and my dad will get better.
However, these evaluations do not truly reflect the reputation of a doctor, or these praises are not enough to judge whether a doctor is trustworthy.
The deputy director of the oncology department of a top domestic cancer hospital told China News Weekly that his hospital had explicitly forbidden doctors to open their own homepages on the aforementioned Internet platform where Ma Jia found Lu Wei, and he did not recommend this type of work. Online consultation service provided by the platform.
Because the doctors in the “Big Three A” hospitals in Beijing, Shanghai, Guangzhou and other places are especially well-known experts, in addition to going out for outpatient clinics, rounds, performing operations, and reviewing cases, they also often go to various studies, lectures, and scientific research, which are very busy.
Therefore, the online answer to the patient’s question may not be the expert himself, or the same person, but a team, so it is difficult to say whether the answer is very accurate and credible.
In the industry, everyone tends to think that the most "net celebrity" doctors are often not necessarily the best doctors.
Pei Honggang, a Shenzhen pediatrician, also wrote an article that patients like to value word of mouth, but unless it is the word of mouth of doctors in their own professional fields, the word of mouth one-sidedly obtained from other patients is not very reliable.
For example, some doctors will follow the patient's request instead of following the medical principles to treat, doing so will have a better reputation among the patients.
In addition, compared with the professional title, the seniority of a doctor is more important, but it is not that the older the better.
Generally speaking, among the doctors at or above the level of attending, those with a working experience of 10-25 years and rich clinical experience are ideal.
Difficult to see a doctor, more difficult to see a tumor
Ma's family is not well-off. During the treatment in Shanghai, his family was continuously emptied.
Ma Jincang and her sister who also suffers from cancer went to the company three times to receive NK cell therapy. The first two prices were 30,000 yuan each, and the last one was 15,000 yuan. The total cost was 150,000 yuan.
As for whether Lu Wei recommends NK therapy to the patient's family, both doctors and patients still hold different opinions.
But generally speaking, the patient's family financial status should be an important consideration for doctors in treatment.
He Yi, an oncologist at the First Hospital of Jiaxing City, Zhejiang Province, often sees patients who have been transferred here from a well-known hospital in Shanghai.
He said, “In the vast cities of the north, some big-name experts may show their professional level and introduce the best, latest, and most expensive treatment to patients, regardless of their financial situation.”
He believes that for those advanced tumors or highly malignant tumors, the disease outcome of most patients is death, which is just a matter of time.
The best doctor is to give the patient a treatment plan within the family's ability within this period of time, delay the arrival of death, and ultimately avoid the loss of money and wealth.
For doctors, they should be required to achieve standardized treatment and self-discipline; patients and their families should seek medical treatment through regular channels, and try to choose the kind of tumor hospital that conducts multidisciplinary diagnosis and treatment (MDT).
In such hospitals, high-risk patients will receive joint consultations with experts from multiple departments such as internal medicine, surgery, imaging, and pathology.
If a patient's treatment plan is discussed and followed up by multiple doctors, avoiding only one doctor to make decisions for him, it is equivalent to being supervised.
"If Dr. Lu Wei had previously thought that his patient's treatment experience would be displayed in front of medical workers across the country, how could he give patients unreasonable choices in some treatment links?" The aforementioned top cancer hospital doctors Say.
Pei Honggang also emphasized that today, the diagnosis and treatment of difficult and complicated diseases is no longer a single soldier, but requires multiple doctors or even multiple departments to collaborate to complete, so first of all, we must find a reliable hospital.
It is almost impossible for patients to learn medical knowledge by themselves and try to gain the initiative in the eyes of experts. Even if they are all oncologists, it is difficult to master the knowledge and treatment of various cancers. Today, even a new anti-tumor drug PD-1 is enough to make oncologists in ordinary hospitals difficult.
Zhuang Shilihe, who works for the Shengnuo family, an organization that provides cross-border medical services, told China News Weekly that it is very difficult for Chinese cancer patients to see a doctor.
From choosing hospitals and doctors to registering and being hospitalized for treatment, there may be pitfalls everywhere along the way.
He studied medicine in Japan before, and even in the less developed city of Hokkaido, locals can get good medical services at home.
However, in China, due to the insufficient supply of doctors and the extremely uneven distribution of medical resources, the ability to receive equal and high-quality treatments, encountering high-level doctors, is like winning the lottery itself, which is very uncertain.
The medical system behind it is essentially the crux of China’s long-term “difficult medical care”.
This is like a cycle of death that cannot go out-everyone is seeking the best medical services, so patients all over the country are flocking to the top hospitals in Beijing, Shanghai and Guangzhou, so high-quality medical resources are increasingly scarce. , The cost that patients need to pay to find a good doctor becomes even higher.
More rational decision
In Chinese social culture, there is a tendency to hide the condition of cancer patients in whole or in part, which makes joint decision-making difficult.
Ma Jincang was suspicious about his condition at first, but his daughter Ma Rong told him that there was a tumor in his stomach, which should be cut off. Ma Jincang may have also noticed it. After all, the patients around him would talk about it, but Ma Rong said, Although he was taking medicine for cancer, Ma Jincang never talked about cancer with his family until his death.
In fact, many Chinese patients with malignant tumors are neither fully informed nor actively involved in treatment decisions.
Cong Yali, a professor in the School of Medical Humanities of Peking University, who is engaged in medical ethics research, investigated the clinical decision-making of patients with malignant tumors in 2014. He interviewed 11 inpatients and their families in the oncology department of two tertiary hospitals in Beijing. The results found that the wishes of their families Usually can get more attention from doctors.
However, the decision-making values of the family and the patient are different-the patient is more concerned about the quality of life in the present, and the family is more concerned about the future survival time.
Since receiving treatment at Shanghai Xinhua Hospital in July last year, Ma Jincang’s body has gradually weakened. Later, he suffered from cancer, couldn’t get up, couldn’t eat, and was “too thin”. In November, he told his daughter on the phone that he didn’t want to. I have been treated and want to go home.
Doctors and family members are more likely to ignore the important dimension of "quality of life" in treatment. On the one hand, they cannot understand the pain of treatment. On the other hand, traditional Chinese culture has always emphasized toughness and patience. People are more likely to treat patients to the "quality of life". The requirement of "" is seen as a manifestation of "weak willpower". This concept further weakens the value of "quality of life."
When Peng Xiaohua read the book "The Best Farewell" in 2014, if she got the treasure, she felt that she had some excessive medical treatment around her and the long-term avoidance of death. She felt the importance of introducing this book to China, which later became this The translator of this book.
She believes that the ability of contemporary medical technology to delay the death process may not necessarily be the gospel, and it may also be an "expensive penalty."
What kind of outlook on life and death may be something that cancer patients’ families need to learn: do they face the end-stage of cancer patients more calmly, or do they actively treat them if they know they can’t do it, even at the expense of the last bit of family property and patient dignity?
"The Best Farewell" author Artu Gwende wrote: "Death is our enemy, and it is destined to be the final winner. In a war that cannot be won, the best general is not to fight until the entire army is annihilated, but Knowing how to capture territory that can be won, and how to surrender if you can’t win. It’s well-founded and perhaps the best strategy for terminal cancer patients and their families.”
China News Weekly, Issue 16, 2021
Statement: The publication of the "China News Weekly" manuscript is authorized in writing