The topic we’re about to start talking about is a business of death.
Death is the definitive end of life, the inevitable end of everyone’s destiny. But the question is, how can people go to death with dignity and grace?
How can we maintain our dignity in the face of death when we are old and incapacitated? When we are suffering from cancer, suffering from illness, and a huge mental and financial blow befalls our family, how can we defuse the double suffering of body and mind?
Thirty years ago, this cause was named “hospice care” and landed in Tianjin in the form of a research center, but the connotation it refers to is limited and people are not well aware of it, so it grows very slowly.
It was not until 2016 that in the “Healthy China 2030” planning outline issued by the State Council, a concept called “hospice care” replaced “hospice care” and officially became China’s policy language to summarize this cause. It means that a professional work for the benefit of death has been put on the agenda of social development.
But what exactly is palliative care? What exactly should palliative care do?
In the past few years, Beijing and Shanghai have been widely regarded as the vane for exploring the development model of palliative care, but in the eastern part of the North China Plain, in Cangzhou, an ordinary third-tier city in Hebei Province, doctor Guo Yanru has a different view.
Before I went to visit her, she posed a very serious question to me: “Do you think we should promote the palliative care model in the big city, or should we promote the prefecture-level or county-level model in those economically underdeveloped areas? A city-level inclusive palliative care model?”
She passed me.
Those ordinary prefecture-level cities, although their economy is not very developed, are spread over most of China and manage the largest population. However, it is more difficult for them to obtain policy support and sufficient financial subsidies from the frontiers of first-tier cities.
This also means that if the palliative care business wants to survive in prefecture-level cities, the experience of Beijing and Shanghai may not be a reference for it.
This is the answer given by Guo Yanru, and it has also evolved into a huge problem she set for herself——
Is it possible to successfully create a truly operable and widely replicable prefecture-level inclusive palliative care development model?
In September 2019, the Department of Palliative Care was established in Cangzhou People’s Hospital Cancer Center with Guo Yanru as the director. She led her team of medical care and volunteers to start an extremely important, but extremely difficult practice.
Cangzhou People’s Hospital Cancer Center, all members of the palliative care department round the room in the morning / Photo by Zhao Jiajia
For Guo Yanru, a former anesthesiologist, the turning point in his career came in 2010.
On the Qingming Festival this year, she received a call. The caller told her that the patient with advanced pancreatic cancer who had an appointment to come to her for treatment had committed suicide by jumping off the building because of the unbearable pain.
At that time, Guo Yanru was still working in anesthesia at Cangzhou Central Hospital. The person on the other end of the phone was a colleague of her hospital, and the deceased patient with pancreatic head cancer was a relative of the colleague. A colleague once contacted Guo Yanru in advance and asked her if she had time to give a relative a nerve block to relieve his pain in the advanced stage of cancer.
At that time, the patient had been in pain for nearly a month and could not lie down and sleep, and was said to have lost weight to the point of being skinny.
This is not difficult at all. As an anesthesiologist, solving pain problems is Guo Yanru’s expertise and her job.
Actually, it’s about $500.
Guo Yanru thinks, based on the hospital’s charging standards, to solve the patient’s pain problem, he only needs 500 yuan at most. “Maybe he can’t even spend 500 yuan, and he can walk very well.”
But she learned from colleagues that in order to cure cancer, the patient spent tens of thousands of yuan a month on medicines, including some traditional Chinese medicines and injections from unknown sources, so he had already exhausted his family.
Perhaps the patient never knew that when the cancer progressed to an advanced stage, in addition to curative treatment, he actually had a pain-relieving and inexpensive option to spend the rest of his life.
She thought that the patient may have lost confidence in medicine in advance due to severe pain and economic hardship, so he chose to end his life in such a tragic way.
It was Guo Yanru’s seventh year of practice, and a patient’s avoidable suicide shook her heart, directly prompting her to make the first turning point in her career that night: she would try to put aside her right and wrong. Worried about lower income and limited career advancement, he began to delve into the niche field of tumor pain management.
A simple thought drove her, “This thing is too cruel, since then I have felt that analgesia should be the most basic, affordable and accessible treatment, even for cancer patients. In the final stage, it is fine to only provide him with pain relief, as long as he is not in pain.”
Photo by Guo Yanru / Zhao Jiajia
More than two months after this incident, another father walked into Guo Yanru’s office.
He is actually only in his 30s, but the ravines at the end of his eyes are deep. People who work in the fields will show such traces of skin aging caused by long-term sun exposure. He was clearly a peasant, and his fingers had grime that was hard to wash off, which gave his fingertips a deep green color. Guo Yanru grew up in the countryside. She knows all too well that only those who pull weeds for a long time in summer can have such green hands.
Standing in front of Guo Yanru, he explained his intentions a little embarrassedly.
His 7-year-old daughter has glioma, which is in an advanced stage. The brain doctor asked him to take the child home, but the child was in too much pain. As he spoke, he looked at Guo Yanru’s expression, and seemed to be worried that he would be rejected by the doctor again. This is too common. When cancer patients enter the advanced stage, many doctors will persuade them to return, on the grounds that the patients have no therapeutic value.
Guo Yanru remembered that he hurriedly said, “Dr. Guo, don’t worry, I know my daughter is dying. I won’t come to you if anything happens, so you can let my child not suffer?”
She did not refuse, which seemed to give him some courage, so she immediately expressed another difficulty of hers: they had spent nearly 500,000 yuan in order to treat the child’s illness.
“I’m just a farmer. Look, can your treatment plan cost as little as possible?” After speaking, he paused again, as if he was worried that his request would cause the doctor’s impatience, so he quickly said , “It’s okay, Doctor Guo, that’s what I said. If it doesn’t work, what do you do? I’ll find a way if the money is not enough.”
More than ten years later, when Guo Yanru recalled the original scene to me, she stood up, shrugged her shoulders, and rubbed her hands together, imitating her father’s embarrassed demeanor due to poverty and anxiety.
From the movement of rubbing her hands, she naturally thought of her parents who were farmers. She said, “You know what, it’s too humble. These people who have no way to seek medical treatment are too humble.”
Routine rounds in the morning / Photo by Zhao Jiajia
Before this, Guo Yanru had never tried analgesia for children. In China, adult tumor analgesia is still a niche field, and the more dangerous pediatric tumor analgesia is even more blank. But in order to formulate a safe, convenient and cost-effective treatment plan for this child, Guo Yanru decided to explore her own path.
At that time, by consulting a large number of foreign literatures, she identified several drugs and corresponding dosages that could be used for children’s pain relief.
The medicines she screened out are relatively common, and they can even be obtained from the village doctor or administered directly through the village doctor. And the treatment according to her plan can basically guarantee safety.
Her initial treatment plan cost no more than 10 yuan per day for medicines. When the child entered the dying stage and the pain worsened, she added a drug called flurbiprofen axetil, and asked the child’s father to buy ten bottles at the pharmacy to take home, each costing 50 yuan.
In the second week of using flurbiprofen axetil, the father returned to Guo Yanru’s department and brought the news of his daughter’s death. The child left peacefully and without pain.
“She fell asleep and left.”
He took out two remaining flurbiprofen axetil from the pocket of his old-fashioned tunic suit, and wanted to use this to thank the doctor for finally letting his daughter leave the world without pain. He said that he originally wanted to buy something, but his family really had no money. There were only these two medicines. If they were sold, they would still be worth 100 yuan.
The appearance of this father made Guo Yanru take another step forward on the road of tumor analgesia. From then on, she not only studied adult tumor analgesia, but also cast her eyes on the field of pediatric tumor analgesia, which almost no one wants to set foot in. .
At that time, she didn’t know what palliative care was, so she had no way of knowing that the memory of the farmer who rubbed her hands for her had secretly divided the camp for the career she would be engaged in in the future, and she wanted to promote it. Motivation for affordable universal palliative care.
More than ten years later, she told me that if you want to survive, you can also achieve it by doing mid-to-high-end palliative care. You only need to use more expensive medicines and therapies for patients, and create luxurious single-room wards. It can also meet the specifications. But Guo Yanru is reluctant to turn it into a luxury item.
I asked her why?
She looked at me with sharp eyes, and asked back, “Just think about it, in a society, are the middle and high-end people more likely to be outcasts, or the common people are more likely to be outcasts?”
Guo Yanru is routinely examining a patient / Photo by Zhao Jiajia
In 2010, her idea of serving end-of-life patients was just a whole-hearted idea, which was not yet clear, and had not yet formed a systematic way of thinking. The moment when this system really took shape in Guo Yanru’s life came with a major family accident.
In 2014, Guo Yanru’s brother and sister-in-law passed away unexpectedly, leaving behind a pile of unfinished debts and two immature children. In 2015, her mother suffered a massive cerebral infarction and was seriously ill in bed for several years, making her abrupt transition from a doctor to a family member of a terminally ill patient.
Before that, she had never really understood why the family of a seriously ill patient became so vulnerable, and why the family members of those patients were so sensitive, and even suddenly angry, “can be ignited like a bomb at any time.”
Paying off debts for her brother and treating her mother’s illness consumed Guo Yanru’s savings from working for ten years in a very short period of time. She still remembers that in front of another doctor, she subconsciously rubbed it like the farmer in the past. hand.
At that time, the doctor wanted to give her mother a drug called alteplase to clear the blood clot. The drug cost 4,000 yuan each at her own expense, but at that time her financial situation was so embarrassing that she “couldn’t even pay the electricity bill at home.” ” and had to borrow money everywhere.
She rubbed her hands unconsciously, thinking about what to do in her heart, but the doctor didn’t even look up at her, but just kept her head down and sketched on the medical record, explaining her condition and medication plan.
She actually wanted to know, are there other options for the treatment plan? Are there any low-cost drugs that may be relatively less effective, but can be negotiated?
But the doctor’s expression was so indifferent that she didn’t say anything in the end.
One month after the mother was admitted to the hospital, the situation did not improve, and the doctors and nurses began to discharge them, because the patient no longer needed to do other examinations, and only incurred bed costs and basic nursing costs every day. Evicted Objects”.
But what about when you get home? The pain of these patients who were abandoned by medicine could not be relieved, and the sudden symptoms could not be controlled. Even if Guo Yanru was a doctor herself, she could not give an answer.
Medicine is too cold, she thought.
“The real real change in my heart was that after my mother got sick, my identity changed, which touched me a lot. It was only then that I started to think, how exactly should you be a doctor? What kind of attitude, to be a doctor?”
The Birth of the Light Blue Ward
In the 20 years he has served as the president and party secretary of Cangzhou People’s Hospital, Wang Zhaofa has witnessed too many deaths.
Around 2008, he once saw a 15-year-old girl who drank paraquat in the emergency room of the main campus. Her blood paraquat content was too high, and the probability of surviving was very low, so she had to give up treatment.
The girl’s consciousness was very clear, and when she was taken away by her family, she gave Wang Zhaofa one last look. He remembered that it was a pair of particularly bright eyes.
Leaving the hospital meant that she had to wait for death in pain. It was difficult for Wang Zhaofa to imagine this process, and he couldn’t help but worry, “What will happen to the child when she gets home? How does she spend these days? She didn’t die immediately after she got home, but there was a (death) process. In this process, she How are you going to spend it?”
In hospitals, too many patients were declared ineffective.
He has seen many patients who have been in the ICU for several months, or even two or three years. Through medical insurance reimbursement, they receive thousands of yuan of treatment every day. At the end of their lives, they are intubated. connected to medical devices in a way that faces death alone.
Wang Zhaofa told me that even with the most advanced diagnosis and treatment methods, sometimes there may not be a significant difference in the survival time of advanced patients.
In 2015, the year when Guo Yanru’s mother suffered a sudden cerebral infarction, in Cangzhou People’s Hospital, after more than three years of construction, an 80-acre oncology hospital was put into use.
The wheelchair provided to the patient for free, the one on the far left is the one used by Guo Yanru’s mother / Photo by Zhao Jiajia
At that time, the state was advocating the establishment of cancer pain wards in hospitals to solve the problem of using narcotics to relieve pain in patients with advanced cancer. However, Wang Zhaofa vaguely felt that the care of terminally ill patients is a social issue, not just an issue related to the acquisition and use of narcotic drugs.
But this idea had to wait until he met Guo Yanru before it really began to take shape.
In those few years, Guo Yanru had begun to explore the practice of palliative care, but she was unable to establish a department alone due to limited conditions in the past. Until 2019, her mother was critically ill, which finally prompted her to make a decision to resign.
Her tortuous life experience and the news of her resignation spread to Wang Zhaofa’s ears.
Wang Zhaofa thought that since Dr. Guo wanted to do palliative care but was not allowed, then the Cangzhou People’s Hospital might be able to create conditions in the newly built tumor hospital to provide her with the support she wanted.
Guo Yanru still remembers the day she and Wang Zhaofa met, when she came to the third floor of the cancer hospital, worried that she might not be able to find the secretary’s office, when Wang Zhaofa had walked through the long corridor and walked into the hall to meet her.
She felt that Wang Zhaofa was not at all like the leader of a big hospital she had seen before. The secretary Wang just told her slowly, Xiao Guo, do what you want, just do it.
So in the spring of 2019, Guo Yanru was finally able to start building a professional palliative care department, and put all the thinking and attempts of these years into this brand-new career. Wang Zhaofa set out an area for her on the third floor of the tumor hospital, and designed and decorated it from scratch.
And what should this department look like in the end? It is entirely up to Guo Yan to decide.
First of all, this ward must meet the configuration of the standard ward of a tertiary hospital, and must have all the medical equipment it should have. It should be a standard ward, not a nursing home.
At the same time, Guo Yanru also formulated many special contents for it.
This department has a separate chat room, retreat room, and spa room.
The chat room is used for communication, and it is arranged as gentle as an ordinary tea room. The four sides of the retreat room are full of Zen murals, which can be used for life and death education or meditation. There are no windows in the spa, where dying patients can transition their life forms. It is extremely quiet and does not see sunlight, because in Chinese tradition, people cannot see light after death, otherwise their souls will be taken away.
The retreat room can be used for meditation and life and death education / photo by Zhao Jiajia
In order to reduce the psychological pressure of the patient, the device strap on the wall used to connect the medical equipment is pushable. When it is not pushed away, it looks like a framed painting for decoration.
If a patient dies in the ward, it will not disturb other patients and their families. Guo Yanru thought about all this in advance. She set up the spa room in the middle of the department. From here, she only needs to open a locked door in the middle of the corridor to lead to a secret elevator. The family members are silent. You can leave with the patient’s body.
The walls of the department were painted light blue, a color that Guo Yanru had left behind despite all the opposition.
At first, everyone thought that it should be painted in warm and bright colors, but Guo Yanru knew that terminally ill patients and their families did not need warm colors, they needed a pure land. So its color should be detached and restrained, a light blue.
Hospice Ward / Photo by Zhao Jiajia
Here, even the poorest people can find their place – Guo Yanru has set up two Huimin wards here. The beds in the Huimin ward are no different from other beds, but it only requires the patient to pay each The cost of a hospital bed is 19 yuan per day, and it can be fully covered by medical insurance.
She took me to visit one of the Huimin wards, which was renovated from Wang Zhaofa’s former secretary’s office. On a clear day, as soon as the curtains were opened, the room was filled with the warm sunshine of early autumn in North China. .
The recruitment of personnel is another problem that worries Guo Yanru.
She is only a pain doctor. It is not enough to relieve the physical symptoms of terminally ill patients on her own. It is unrealistic to always invite doctors from other departments in the hospital to come for consultation, so she decided to organize An interdisciplinary healthcare team.
At that time, Wang Zhaofa happened to meet Ji Xiaoliang, a new respiratory doctor. He saw that Ji Xiaoliang was gentle and sunny, and decided that he was the most suitable for palliative care with Guo Yanru. Later, he was promoted from breast surgery as the best-tempered and most capable. Liu Zhijing came to be the head nurse for the palliative care department.
Head nurse Liu Zhijing / Photo by Zhao Jiajia
The difficulty in recruiting staff is that palliative care has not yet become a specialized discipline, and without specialized talents, discipline construction will be impossible. Guo Yanru only recruited her first graduate student this year, and this only student was recruited under the name of general medicine.
People accumulate little by little.
Several colleagues who had previously worked in the Central Hospital resigned and came to follow Guo Yanru to do palliative care. There were also two doctors who were former colleagues of Ji Xiaoliang and were also forced to come here. Now, Guo Yanru finally has a team of doctors covering respiratory, neurology, pediatrics, and critical care, as well as a multidisciplinary nursing team that includes radiotherapy, pediatrics, tumor intervention, etc.
She also set up a full-time medical social worker position to link various necessary social resources, which is extremely rare in hospitals in the north.
Those who have attained the Tao get more help, and this saying began to be fulfilled in Guo Yanru. After building up an entire multidisciplinary medical team, in 2020, some wonderful people jumped in front of him like “Monkey King fell from the sky”.
At that time, she went to participate in a public welfare activity, and was assigned to the same group as an old man in his 70s to plant trees. Seeing that the old man was getting old, she wanted to ask him to support the tree and bury the soil by himself, but the old man immediately Not happy, have to do it yourself. Later, she learned that the uncle’s name was Zhao Hongyan, and he was an old leader of the civil affairs department before retiring.
It was at that event that Guo Yanru met his good friend Gu Hualin through the introduction of Zhao Hongyan.
When they got acquainted, Gu Hualin was telling the people around him about his life experience. Many people felt bad and turned away. Only Guo Yanru was left there, because she heard the old man say that he would suture corpse.
He said that those who fell from the telephone poles may have fallen beyond recognition. When they died, their arms and legs were separated, and he could still sew them back intact.
The appearance of Gu Hualin was a great surprise. In Guo Yanru’s words, it is “whatever you want”. At that time, she was looking for such a person who was good at sorting out her remains, and she had nowhere to go after breaking through the iron shoes. At this moment, such a right person unexpectedly broke into her field of vision.
And Zhao Hongyan and Gu Hualin have since become frequent visitors of the palliative care department. They are affectionately called “Uncle Zhao (bai, one sound)” and “Uncle Gu” by the people of Corey, with volunteer numbers 002 and 003.
Uncle Zhao’s specialty is to go to the palliative care ward to cut the patient’s hair, and every time he will have six or seven haircuts. Guo Yanru also has short hair. When her hair grows, she always looks at Uncle Zhao. And Uncle Gu has trained a whole medical and nursing team for Guo Yanru who is proficient in the organization of the remains, and has also personally sent away many deceased patients.
Zhao Hongyan cuts the patient’s hair / Photo courtesy of the interviewee
The two uncles were getting older, and they had clearly told Guo Yanru that they were doing good deeds for themselves, and that they would live here when they became old and sick.
If the patients here can walk so decently now, what should they worry about in the future?
Guo Yanru feels that the reason why these people can come together is not because of her own charisma, but because the matter itself “wins the hearts of the people”. Who won’t come to this day? Everyone will come to this day. “Everyone sees their future destiny in these people who have passed away,” she said.
Medical Professionalism and the Path to Disappearance
In early 2017, for the first time, the state delineated basic standards and management norms for palliative care centers in the form of official documents. Its emergence has brought a principled consensus to the industry. But how palliative care work is actually implemented is a far more complex issue than imagined.
On September 18, 2019, in the Cangzhou City People’s Hospital Cancer Center, the palliative care ward was officially opened.
Wang Zhaofa (first from right), secretary of Cangzhou Medical College Liu Jian (first from left), Guo Yanru (second from right), and Liu Zhijing (second from left) jointly unveiled the plaque when the department of palliative care opened / Photo courtesy of the interviewee
During the initial period, many family members of patients would call to ask strange questions, “Is your place a sanatorium?” There were even doctors from other departments who came to consult and asked Guo Yanru, “Can you do infusions there?”
She didn’t know whether to laugh or cry, so she had to repeat to everyone, “The essence of palliative care is a medical problem.”
The palliative care department generally accepts patients with end-stage chronic diseases and end-stage malignant tumors in the elderly. Among them, patients with malignant tumors are divided into adults and children. These patients are basically in the late stages of life, and their bodies bear the burden of many “high symptoms”, the first of which is pain.
In this department, enduring pain is no longer considered a strong virtue, but an issue that is taken seriously.
Morphine, the most effective drug for solving this problem, can be administered orally and subcutaneously. Guo Yanru told me that she had met many patients and their families who were worried about morphine, and she would tell them that morphine is not a drug, but a drug.
“First, the dose is very small. Second, it’s safe and doesn’t cause organ damage. Third, the form of opioids now used for cancer pain treatment is very less addictive, which is due to its It is determined by its chemical structure, which is different from the structure and composition of drugs. It’s just that you have to find a professional doctor and follow his instructions to regulate medication.”
Oral morphine is a small tablet. If the pain is not particularly severe, you only need to take one or two tablets a day. It will act on the human body from the two channels of the central and peripheral nerves, and the pain can be eliminated in only half an hour to an hour. If the symptoms are more severe, the doctor will gradually increase the dose of the drug according to the needs of the condition.
But the symptoms that need to be managed go far beyond pain.
In the “Palliative Care Practice Guidelines (Trial)” issued by the National Health and Family Planning Commission in 2017, 13 basic symptoms have been displayed, but the reality is often more complicated.
Professor Li Jinxiang, the subject leader of the Department of Palliative Medicine, West China Fourth Hospital of Sichuan University, once listed more than 60 major painful symptoms in his book “Palliative Medicine”, including dyspnea, dysphagia, heartburn, intestinal obstruction, bladder spasm, etc. And so on, throughout the human body’s digestion, urinary, blood, nerves and other important systems.
One of the most overlooked facts is that dying with dignity is far from a peaceful humanitarian proposition. In the past, hospice care emphasized “care”, but the essence of palliative care lies in “medical treatment” and “nursing”. From a medical point of view, the pain that people need to deal with in the process of gradually dying is too much.
Ji Xiaoliang was originally a respiratory specialist. Before he came to the palliative care department, he never imagined that the work in this department would pose such a big challenge to him on a professional level.
Dr. Ji Xiaoliang (left) / Photo by Zhao Jiajia
When he first came, he encountered a patient with sudden gastrointestinal bleeding. It was not a small amount of hemoptysis like a patient in the respiratory department, but vomited out blood in a big mouth. Although he knew some basic treatment principles, he didn’t know how to better control his symptoms. “You don’t know what will happen to him next. When you explain the condition to the patient’s family, you have no idea. of.”
In addition, he also encountered many problems that he had never dealt with, such as renal failure, heart failure, jaundice, and the mental restlessness of patients with advanced cancer, all of which left him helpless.
In the palliative care department, the mental pressure of medical staff is far heavier than most departments, because here, the end point of the patient is not the cure of the disease, but the exact death. Coupled with the complex and difficult symptoms that are always faced, the emotions of self-denial come to mind day after day.
When he was most depressed, Ji Xiaoliang once said that he didn’t want to do it anymore, not because he couldn’t do palliative care, but “I don’t think I can be a doctor anymore.”
Ma Jing, a nurse transferred from the Interventional Department, once heard from colleagues in other departments that there are only so many patients in your department, why are you tired? How good, right?
She frowned and looked a little sad, “I said, you only see the surface. You only see the small number of patients, but do you see their quality? There are indeed many patients in other departments, but their illnesses are mild. You don’t need to look at him every hour every day. 19 of the 20 patients in our department are first-level, that is, the condition is relatively serious, and 100 patients in other departments may only have 10 first-level. The quality is different, the intensity of care It’s different.”
In the interventional department, Ma Jing only needs to give patients injections and infusions according to professional routines every day. At most, they will be discharged in three or five days without excessive nursing care. But in palliative care, she has to focus on all aspects of the patient.
The head nurse is guiding the patient to move their feet / photo by Zhao Jiajia
In addition to paying attention to the physical condition of her patients, she also needs to pay extra attention to their psychological condition. These late-life patients are no more patient than those who have the possibility of being cured. When infusions are performed, they will “play, I will not infuse” and “pull needles”, all kinds of things. To this end, she spends a lot of time communicating with patients to stabilize their emotions.
For her, the hardest part is dealing with children.
The children who came to the hospice care department were seriously ill and needed frequent injections and infusions, but their blood vessels were more slender and fragile.
As a mother, she also felt sorry for the children who were tortured to the point of crying. “Every time before the needle was inserted, she had to search and search, touch and touch, read and look, for fear that a single needle would not be able to pierce them. After the piercing, my hands were all sweaty, and my hands were slippery while holding the child, which is no exaggeration at all.”
Ji Xiaoliang was the first doctor to come to the palliative care department, so he did spend a very difficult time with Guo Yanru.
Fortunately, the professional problems he faced, as the department recruited more and more doctors and covered a wider and wider spectrum of diseases, everyone learned from each other, and slowly improved themselves, and finally gradually changed their origins. Many of their shortcomings have been filled, making them a group of doctors with more comprehensive abilities.
Morning routine check / photo by Zhao Jiajia
But after completing his professional ability, Ji Xiaoliang considered leaving the department. At that time, he went to take the civil service exam and even passed the written exam. And he is not an exception. During the interview, I found that several members of the department had the idea of leaving.
In addition to mental stress, there is a more core reason that prompted them to have this idea, that is, the sharp drop in income. After coming to the palliative care department, their income has dropped by 30% to 60%.
This is how a paradoxical situation arose.
Here, medical staff are facing the challenge of higher comprehensive ability and are under higher mental pressure than before, but their salaries have experienced a rapid and cliff-like decline. In fact, in Cangzhou City People’s Hospital, Party Secretary Wang Zhaofa has done his best to provide subsidies for the average award for the palliative care department, but it is still difficult to alleviate everyone’s financial anxiety.
And this is the general situation of the current development of the palliative care industry. According to the current salary evaluation system of the medical system, the palliative care department has almost indisputably become a department that “cannot generate economic benefits” under the quantitative evaluation standard, and then directly Affect the income level of employees.
But this is not the most serious problem.
Guo Yanru told me that along with the half-cut income, there is also the dilemma of personnel promotion.
Because palliative care currently does not have its own discipline, medical staff have therefore lost a clear path to promotion. That is to say, even if this group of people does well in palliative care, it is difficult for them to gain professional titles. If they want to be promoted, they can only go through the professional title evaluation process of their original specialty.
“I have left my original major. I am now mainly doing palliative care work, but when I was promoted, you brought me back to my original major. Think about it, how difficult is it for me to be promoted? My current research The articles are all focused on palliative care work, and if I go back to my original major, my articles don’t match, right? That’s a big problem.”
Guo Yanru is almost always worried about the survival of her team members, but for a department director like her, there are too few things she can do.
In fact, she is promoting the growth of this discipline with an extremely precise and enthusiastic desire, but it is more like Sisyphus pushing the boulders in the mountains. She thought that if one day someone wanted to leave this department, she would never complain, but would only be grateful that they stayed with her for many years under such difficult circumstances.
left by death
In 2010, when the farmer’s father came to Guo Yanru to formulate a pain relief plan, he used his daughter’s small schoolbag to pack a bag of peanuts for Guo Yanru. The peanuts were apparently freshly dug out of the ground and wrapped in soil.
Guo Yanru accepted it.
She thought, this is probably the best gift this father can give at the moment, “If I don’t accept these peanuts, I think he will be very disturbed, and may think that I will not give his child a good look, I said ‘Okay, I really like peanuts,’ and he was very happy when he heard me say that.”
A week later, the child died. When the father brought the news and two flurbiprofen axetil, Guo Yanru put 200 yuan in the envelope and stuffed the envelope to him in the name of “burning some paper for the child to feel at ease”.
It’s just that Guo Yanru didn’t expect that for the next three years, the child’s father would make a special trip to bring her a large bag of peanuts every year.
In the third year, he told Guo Yanru that he would not come again. Because before finding Guo Yanru, his daughter had been suffering for a long time, and this experience left serious psychological trauma to the mother of the child. In the past three years, the child’s mother’s mental state has been getting worse and worse, and she has gradually become confused to the point where she must be taken care of by people at all times.
At that time, Guo Yanru didn’t know what death education and grief counseling were, but from the fate of the couple, she gradually realized that death is not just something related to the deceased.
When the sick person steps into the threshold of death, the living person is actually prostrate before that threshold, and suffers the continual grief along with it.
People die like a lamp, and what this silent death leaves behind is actually the question of how the living live.
“Condemn Me” stills
On the night of August 15, 2020, when Ma Jing was on duty, she took in Qi Qi, a 9-year-old girl with leukemia. She looked chubby and pink. She was the “beautiful like an angel” child in Guo Yanru’s mouth.
It’s just that she has come to the end of her life.
When she first came, her legs were in severe pain. Even if she accidentally touched her legs when she turned over, the pain would bring tears to her eyes. But other than that, she was strong most of the time. Ma Jing remembered that she was very nervous when she first drew Qiqi’s blood, but Qiqi’s mother told her, “It’s okay, you can do it, Qiqi won’t make trouble.” So the child really hugged her mother quietly, motionless, and let Ma Jing draw blood.
After spending some time in the palliative care department and taking analgesics, Qi Qi’s spirit has improved significantly, and she likes to read books, draw and make clay figures. But Ma Jing always felt that Qi Qi seemed to be a cold child because she didn’t like to laugh very much.
Once, Qiqi told Guo Yanru that she had been sick since she was 4 years old, so she spent most of her life in the hospital, “Auntie, I have never been to school.”
So Guo Yanru thought of a way for her. In their team, there is a volunteer named Lan Xiang, a children’s literature writer and a language teacher at a local primary school. Guo Yanru invited her to plan a small class for Qi Qi in the ward to satisfy her needs. wish.
Teacher Lanxiang / Photo courtesy of the interviewee
It was from the contact between Lan Xiang and Qi Qi that everyone finally learned the reason why Qi Qi did not like to laugh.
“Because Lanxiang asked her, Qiqi, why do I feel you are serious every time I come? She said because my mother is like this. She told Lanxiang, Teacher Lan, in fact, I know everything, my mother thought I was I don’t know. She said that my mother is serious and serious every day. Sometimes I see her eyes are red and I know she is crying. She doesn’t laugh, so I don’t dare to laugh, only my mother When I smile, I dare to smile happily.”
Lanxiang realized that the mother’s grief for the loss of her child had actually penetrated the child’s heart, but for a long time, the mother did not notice all this. So Lanxiang found Qiqi’s mother and told her Qiqi’s answer.
It is precisely because of this subtle discovery that Qiqi’s mother was able to adjust her emotions in time. Guo Yanru remembered that in the last period before Qi Qi’s death, when she went to the ward rounds every day, she felt that the child was happy, and she was no longer as cold as she used to be.
The night that Qiqi left, Ma Jing stayed outside the ward. She was so distressed that she cried, and did not dare to take a last look.
When the child died of leukemia, her coagulation function would disintegrate, and blood would flow out from her eyes, ears, nose, and mouth. Guo Yanru brought Uncle Gu and Uncle Zhao together, and they worked together for most of the night until they cleaned up the blood on Qi Qi’s body, put on makeup on the child, and turned into that beautiful angel again, so she dared to let her mother in. Look.
Guo Yanru knows that it is more appropriate to let relatives see the patient die with dignity than any verbal comfort.
After the parents sent Qi Qi’s body to be cremated, they returned to Guo Yanru’s office and knelt down before her. Qiqi’s mother said, I thank you for my daughter, thank you two old people, so that she can walk beautifully.
This is a small tiger that Qiqi pinched for Guo Yanru. After Qiqi left, Guo Yanru kept it on her desk / photo by Zhao Jiajia
The smiles of Qiqi and her mother are actually a silent change of moisturizing things, but in contrast, there are still many patients dying, which will create more severe conflicts. How to solve these conflicts will always test the insight of Guo Yanru and her colleagues. strength, rational thinking, and the organization of social relationships.
The department once received a painter with advanced cancer. She and her husband reorganized their family after divorce. Both husband and wife had one child before marriage, and another child after marriage. After they got married, they bought a house in Hainan. In order to raise money to buy a house for them, the painter’s mother invested her pension into it.
In such a family, the painter plays the role of maintaining the relationship between everyone, and when her life reaches the final stage, problems will arise.
At that time, her mother was worried about the maintenance of her two children after her daughter’s death, and she was also afraid that her pension would be wiped out with the outflow of the property. After all, once the daughter died, there would be no relationship between the son-in-law and the mother. There is a clear kinship.
Therefore, she asked her daughter to dispose of the property in Hainan, distribute the estate reasonably, and make a will.
But the husband does not agree with the wife to do so. At that time, their property in Hainan was involved in an economic dispute. If the property was dealt with immediately, it would bring greater economic losses. He assured his wife that he would raise the children and support the elderly, and that after the real estate dispute was resolved, he would proceed according to the wishes of the elderly.
The two sides were at a stalemate until one day, the conflict broke out in the most violent form.
Guo Yanru remembered that day, there was a loud noise in the ward. When she arrived, she saw the painter who had shaved his head due to chemotherapy lying naked on the ground. She splashed water on herself and patted the wet ground with her hands. , saying that everyone was pushing her, she yelled at her husband and mother–“You drown me!”
At this moment, if you immediately intervene to make peace, it may not have any effect, and may even further aggravate the emotions of the parties. While thinking about it, Guo Yanru asked the patient’s husband and mother out of the ward, and then walked in by herself. Ward, stay with her, but don’t say a word.
Until the other party calmed down, he took the initiative to ask her, “Director Guo, why don’t you care about me?”
At this time, Guo Yanru began to ask her to tell the reason for the incident. Guo Yanru actually didn’t understand the twists and turns of the issue of estate distribution for terminally ill patients. She just gave a suggestion for them to consult a professional will notary. But usually, the notarization requires the party to go to the scene to apply, and the party is seriously ill and cannot leave the hospital. What should I do?
Guo Yanru told her, “No problem, we’ll call the notary to the ward.
For a long time, Yuan Yuan’s existence has puzzled doctors in other departments. She is a medical social worker in the palliative care department. But in Guo Yanru’s plan, the existence of medical social workers is very important. In Keli, it is Yuan Yuan who organizes the volunteer team and links various necessary social resources.
The family conflict of the painter gave birth to the first case of notarization of wills since the establishment of the department, but Yuan Yuan was completely groping from scratch on what to do when the notary entered the ward.
She found two notary offices in Cangzhou City, and actively persuaded them to go to the ward for notarization. At the beginning, the staff still had many doubts. During the repeated communication process, the leader of the notary office noticed Yuan Yuan, and only then did they know that there was such a department and such a group of terminally ill patients who needed notarization, so they sent two A business specialist who specializes in notarization matters with the palliative care department.
The staff of the Notary Office of Cangzhou Cangzhou District entered the ward to give a notarization science lecture to answer questions about the inheritance of the patient’s family.
In fact, this process is not complicated, but many people may not realize that palliative care can still be done in this way. It turns out that people’s small kindness and wisdom can also become the fulcrum of a serious business.
In the end, in the ward, Yuan Yuan brought together the painter, her husband and mother, the medical staff in the department, and the notary public, and held a “family meeting”. Recognition, medical assessment, and notary witnesses come together to resolve the conflict.
The painter made a will and distributed her property, which took effect after her husband settled the property dispute.
This will also takes into account the demands of the painter’s husband and mother, and the notary will archive professional documents, on-site audio and video recordings, all of which have a high degree of legal effect, eliminating the risks brought by the uncertainty of human nature. .
The painter’s dying story is dramatic, but that doesn’t mean it lacks representation.
For those terminally ill patients, especially those who have reached the end of life due to malignant tumors, family conflicts, property disputes, and medical disputes similar to painters are so common, and farce has also been used in palliative care in various forms. Nursing staged.
If you want the deceased to pass away with peace of mind and the living to continue to live well, all the propositions involved will actually converge into a huge system. It is a medical issue as well as an ethical, legal and social issue. It is so detailed. , requires a group of professional and kind people who pay great attention and patience to take care of all aspects of life.
A patient from Hengshui and his wife held a golden wedding ceremony in the hospice ward for the 50th anniversary of their marriage / Photo courtesy of the interviewee
Before I came to the palliative care department of Cangzhou People’s Hospital, I had never seen such doctors and nurses.
When a patient is admitted to the hospital, this group of people will chase after you and ask, have you implemented the reimbursement procedures for serious illness medical insurance? If not, they will think of a way to do it for you, because it can increase the reimbursement rate for hospitalization. A wife whose husband is about to die cry all day long. They will inquire about the reason and find out that the two minor children are difficult to raise, so they ask volunteers with social energy to find a kind person who is willing to contribute, and promise to support the child until the child grows up. big. They would dress the sick little friend in a nice little suit when he died, as he wished. When a patient I knew passed away, when they went to express their condolences, I accidentally saw the head nurse hug and say goodbye to the wife and daughter of the deceased in tears.
Their presence has convinced me that palliative care is a business that must be carefully nurtured, and that its health and growth will reflect the civilization of the entire country.
no pain city
Before the real completion of the hospice ward, there was actually a more secret wish in Wang Zhaofa’s heart.
He told me that his real starting point was not simply to build a new ward, but to promote palliative care as a social undertaking on the land of Cangzhou. To build a city where patients die without pain? That’s what I was thinking about.”
As the first palliative care department in Cangzhou City to be opened in a tertiary hospital, they finally provided a total of 28 beds, which is very small for a city with a population of more than 7 million.
The concept of “a city without pain” mentioned by Wang Zhaofa cannot be realized only by relying on the beds of tertiary hospitals. Behind it, there is a more systematic development logic – the tranquility of tertiary hospitals should be as much as possible. Nursing care services radiate to primary medical and health organizations, and even to the home level.
Wang Zhaofa’s wish almost coincides with Guo Yanru’s idea.
The two elderly people are husband and wife and they are admitted to the palliative care department together. Guo Yanru arranged them in the same ward. Standing there are the three daughters of the elderly person / Photo courtesy of the interviewee
Half a year after the opening of the department, when various tasks stabilized, Guo Yanru began to initiate a medical alliance plan with palliative care as the core task, recruiting those secondary hospitals, township health centers, and community health service centers who voluntarily joined. , and elderly care institutions, trying to find a standardized “five-level care model”.
Guo Yanru believes that Cangzhou, as a third-tier city with 10 counties and more than 7 million permanent residents, its existence is universal across the country.
Those prefecture-level cities that are roughly similar to Cangzhou have almost the same number of medical institutions and service levels. If she can make a palliative care model that can work in Cangzhou and is accessible to the local people, it means However, this model is likely to be easily rolled out across the country.
Originally, according to her plan, she would use her department as a regional palliative care demonstration center in Cangzhou.
The mission of the demonstration center is to formulate localized palliative care standards and systems, and serve as a training base to provide technical support for institutions at all levels within the medical consortium. The hard part.”
Further down is the secondary hospital. Every two or three county towns, you can find a county hospital that does palliative care.
Concerned about the survival of palliative care in county hospitals, Guo Yanru even took into account their business model, “This department can combine medical care with nursing care and palliative care in the other, so that it can meet the needs of the county hospital’s vacant bed reuse, medical care and nursing care. Combining this part can bring them a part of the profit, and overall they can survive.”
The most important part of this model is the following township health centers and community health service centers.
They can provide basic palliative care services for patients with mild symptoms, supply narcotics for pain relief, and provide medication and nursing training for those who want to stay at home.
If this model can be scaled up, patients will no longer need to travel all the way to seek palliative care services, and they will be able to find an institution that best meets their needs within a 200-kilometer range.
For those cases who came to Guo Yanru for palliative care, like Qi Qi, a girl with leukemia, who came from Qingdao, Shandong, Guo Yanru didn’t think it was something to brag about at all, “They themselves can’t stand the toss. Don’t you think it’s sad to have to travel so far to get a palliative care service? It’s not something to be proud of.”
Guo Yanru will always remember that when Qiqi was too far away from home, her parents chose to cremate her in Cangzhou, which became an irreparable regret. And 200 kilometers is a distance that can be crossed in about three hours without driving fatigue.
She told me that the reason for setting this range is that it is the longest time limit that can ensure that the body will not stink when it is transported home, which is enough to preserve the dignity of the deceased to the greatest extent.
This is a child who was transferred from the ICU. He came with a tracheal intubation. In order to let the child walk with dignity, volunteers cut and washed the child’s hair on the bed / Photo courtesy of the interviewee
In fact, when Guo Yanru was formulating her plan, she tried to design it according to the existing conditions as much as possible, but the resistance she encountered now is far more powerful than she imagined.
In the end, there were only 15 institutions that voluntarily joined the medical consortium.
I asked her, is there any case that has done relatively well? She was silent for a while, then told me, “No.”
Where is the problem?
On November 29, 2020, at the press conference of the “Blue Book on the Development of Palliative Medicine in China 2019-2020”, Han Qide, vice chairman of the 12th National Committee of the Chinese People’s Political Consultative Conference and academician of the Chinese Academy of Sciences, once proposed that palliative care and palliative care should be included in basic medical care. “This is not only respect for life, but also an important basis for the further improvement of relevant medical insurance policies.”
However, palliative care has not been included in the “three categories” of my country’s basic medical insurance. This is the reality we are currently facing.
This is the case in large part because palliative care does not yet have a specialist fee program. In the process of serving patients, palliative care facilities at all levels can only charge the regular fees of traditional medical services.
In Guo Yanru’s department, the iconic palliative care work that requires a lot of time and energy to carry out death education, grief counseling, and reorganization of remains are all done for free. And even if you want to charge, you can’t find the corresponding charge.
Another effect of developing a medical consortium is that medical institutions at all levels within the medical consortium can build an ecological network with more unified information to facilitate upward or downward referral of patients.
Patients with refractory conditions can be transferred up from lower-level hospitals to tertiary hospitals within the medical consortium, while patients who are in remission and want to be closer to home can also be transferred to primary health care organizations.
If you really want to expand palliative care, the importance of flexible referral is self-evident. If this chain is successfully built, then the home-based tranquillity care that best fits the Chinese people’s idea of returning to their roots will no longer be an unattainable vision.
But its premise is that the industry must have clear access and grading standards in order to accurately describe the patient’s condition. It can describe what kind of patients are suitable for palliative care, and can also describe the conditions of the patient’s disease to be referred up and down.
At the same time, it can also provide ideas and basis for the formulation of special medical insurance policies.
However, all these standards are still blank.
As for primary medical organizations, they should have played the most important role in the development of hospice care, undertaking referrals from higher-level hospitals, and opening up the “last mile” of patients’ home services. But their living conditions are even more worrying.
Guo Yanru’s industry friend Ji Guangwei took the lead in establishing the first palliative care center in Wuhan in 2018, but just 1,391 days after the establishment of this center, it was removed from its famous brand and ended sadly.
On November 30, 2021, the first palliative care center in Wuhan, which was established by Ji Guangwei, was delisted and closed down / Wuhan palliative care WeChat public account
Ji Guangwei told me that this institution is affiliated with a community health service center. For more than three years, he was the only doctor here, and the nurses were also transferred semi-mandatory. Dealing with people is very stressful both physically and mentally”, but also because “employees do not have a decent income”.
Gao Shan, a specially-appointed expert from the Statistical Information Center of the National Health and Medical Commission, in a theme forum on October 13 this year, in-depth analysis of the root cause of the difficulty of community-based hospice care—
From the point of view of financial mechanism, my country’s community health service centers cannot actually obtain benefits from their own medical behaviors. Its survival largely depends on the government’s financial allocation. Adding palliative care services to community health service centers will not only fail to bring profits to it, but will squeeze its original funding space.
Therefore, providing special financial subsidies for palliative care is almost the only way for primary medical institutions to carry out such services.
In fact, this special subsidy may not necessarily become a new financial burden. In this regard, Guo Yanru and I once calculated an account with reverse thinking.
“For example, a patient with advanced cancer spends an average of 3,000 yuan a day. He spent a month in a tertiary hospital, and he generated 90,000 yuan, right? If he goes to the community to receive palliative care, we will follow the minimum standard of 500 yuan a day. To calculate, it is 15,000 yuan per month, so 75,000 yuan is saved, right? The quality of death is still very good, right? If according to the highest standard, 1,000 yuan per day, then 60,000 yuan will be saved. “
She believes that this will not only not increase the burden on the national medical insurance fund, but will instead encourage terminally ill patients to choose a higher-quality and lower-cost way of dying, effectively relieving the pressure on the medical insurance fund.
In order to solve the survival problem of palliative care institutions, European and American countries have indeed made a lot of efforts to explore solutions. Among them, the experience of the United States may be our reference.
Since the federal government enacted the Tax Equity and Fiscal Responsibility Act in 1982, the United States Medicare has provided palliative care benefits.
For community home palliative care services, they implement a bed-day payment system, paying a fixed daily fee to carry out this work, and there are corresponding payment standards for different levels of palliative care.
In the Huimin Ward, the daily bed fee is 19 yuan / Photo courtesy of the respondent
Under this benefit system, during palliative care, treatment programs aimed at curing terminal illnesses, prescription drugs and care services provided by non-hospice teams will no longer be covered by Medicare.
This also means that in the United States, when the patient’s disease has no possibility of being cured at the medical level, and life has entered the terminal stage, if the patient still wants to choose to continue to cure the terminal illness, then he can no longer enjoy the old-age medical insurance belt. benefits, but need to receive treatment at their own expense.
Correspondingly, the Benefit Improvement and Protection Act of 2001 increased Medicare hospice reimbursement rates by another 5 percentage points.
In addition to worrying about survival, another thorny problem Ji Guangwei faced in his practice at the time was that, as a palliative care institution established within a community health service center, they did not have the qualifications to obtain narcotic drugs.
The special thing about this institution is that its geographical location is inside a tertiary hospital, and Ji Guangwei is also a registered doctor of this hospital and a licensed physician with the qualification for prescribing narcotic drugs, so he chose to prescribe anesthesia from the tertiary hospital. Essence medicine, take it to the palliative care center to use.
Once the center is geographically separated from the tertiary hospital, it will be difficult for Ji Guangwei to provide pain relief to patients.
Analgesia is the key to palliative care, but the control of narcotic drugs is relatively strict. Due to the lack of clear access to medicines and qualifications for prescribing medicines, it is actually difficult to carry out analgesia in the current community and home palliative care models.
This makes it practically a set of paradoxes in community and home hospice outreach efforts.
So for those advanced patients who have more severe pain symptoms, unable to eat normally, and it is difficult to go to the hospital for face-to-face consultation, is it possible to find some home use that is safer, works faster, can be absorbed without the aid of the digestive tract, and is the most efficient Important – pain relievers that are readily available in an outpatient setting?
In order to solve this problem, Guo Yanru led her team members and began to participate in the clinical trials of some new analgesic drugs.
If you can launch some analgesic tablets similar to Suxiao Jiuxin Pills, it doesn’t matter even if the patient’s stomach can’t digest it, you just need to put this kind of medicine in your mouth, soak it with saliva, and it will be cracked and then applied to the whole body. .
In addition, patch-type drugs can also provide a good idea. As long as they are developed to be safe enough for home use, the patient can apply it to the skin and absorb the pain relief.
An 11-month-old child with optic blastoma from Tangshan was in severe pain. After he came to the palliative care department, he used an analgesic pump. When he saw Guo Yanru the next day, he reached out and grabbed her from a distance. Finger / Photo courtesy of the respondent
But in addition to the drug problem, there are still many problems to be solved.
How to carry out the construction of palliative care disciplines in colleges and universities? Is there a procedure for the administrative license for primary medical organizations to carry out palliative care work? Can medical staff come to provide home services with legal protection for multi-site practice? How to charge for door-to-door service? Can home patients get the convenience of making medical insurance billing at home?
This is a road with endless twists and turns. As Wang Zhaofa said, they are now in a “difficult climbing stage”.
In the ward, I met Pampascus, a mother who often walked up and down the aisles with a stroller.
Her child, Peng Peng, was born with a white face and big, shining eyes, but his head looked rather heavy and swollen due to the accumulation of fluid in the brain caused by the malignant tumor.
Guo Yanru always told me that she felt that when the mother looked at the child, there was light in her eyes, even from a medical perspective, the emotional interactions she had with him were actually difficult to get a response.
Peng Peng was born in the winter of 2019, when the new crown pandemic began.
At first, his growth was no different from other children, he loved to play and play, “seeing people was happy”, until he was one year old, the accident happened irreversibly.
At that time, he first appeared to accumulate food, vomited everything he ate, didn’t defecate, and didn’t fart, then he couldn’t sit still, couldn’t hold things, and then twitched all over his body and clenched his teeth until he fell into a coma.
Pu Wei remembered that it was nine o’clock on the night of Peng Peng’s first birthday. The local doctor in Cangzhou City told her, “Don’t delay, let’s transfer to another hospital. She asked the doctor, where can I transfer to?”
“Go directly to Beijing.”
So they hurriedly packed their bags and drove directly to Beijing Children’s Hospital overnight. Pu Wei couldn’t bear to wait in a long line, she hugged the unconscious child and broke into the emergency room. The doctor attending the consultation looked very young, but after a brief examination, the other party gave Puwei a particularly clear conclusion, “Your child is the problem with the head.”
CT results showed that Peng Peng’s brain developed a tumor, the growth of the tumor caused intracranial hydrocephalus, so he was in a coma.
Moreover, without the premise of pathological examination, the doctor of Beijing Children’s Hospital had already informed Pu Wei that it was likely to be a malignant tumor. At first, she didn’t understand, how did she know it was a malignant tumor if she didn’t do the pathology or surgery? Later, she traveled to hospitals in Hebei, Beijing, and Tianjin before confirming this judgment from many doctors.
This is because of the “bad location” in which the tumor grows. Gong Jian, director of the Pediatric Neurosurgery Ward of Tiantan Hospital, once told her that Peng Peng’s tumor was probably a thalamic glioma. “The tumor in this area is not clean and is generally not benign.”
Gong Jian is already regarded as the top expert in the field of intracranial tumor treatment for children in China, but even he can only tell Pu Wei that if active treatment is adopted, the operation will bring sequelae, and the child may suffer from coma, hemiplegia, and aphasia. , and also require chemoradiotherapy.
None of this is acceptable to a mother.
After the child was diagnosed, he became one of the “outcasts” Guo Yanru once said, so Pu Wei took him and started a long wandering.
Pu Wei and Peng Peng / Photo by Zhao Jiajia
Because doctors in Beijing judged that Peng Peng might die soon, the grandfather who once loved him most refused to see him for the last time, while the child’s grandmother’s family firmly opposed Peng Wei taking the child home, for fear of the child’s death at home. In their opinion, a child who died at a young age was unlucky and would threaten the growth of another daughter of Pampascus.
On the other hand, Peng Peng experienced repeated convulsions, coma, and high fever. Each attack may mean that death is approaching.
Pampas cannot sit still. She wandered between hospitals, praying that the doctors could give the child some basic treatment. To this end, she asked many acquaintances for help, and she also pretended to have no understanding of the child’s condition at all, went to the local hospital to start the examination from scratch, and decided to rely on conservative treatment there.
In the end, the doctor just expelled them and told them to go to Beijing to find a big hospital, “We can’t cure it here, don’t care what kind of treatment you take, it can’t be cured.”
When he finally stood at the entrance of the palliative care department of Cangzhou People’s Hospital, Pu Wei was very surprised.
She told me that this light blue ward looked really “quiet” and that it was not at all as crowded and noisy as other departments in the hospital, even though she had no concept of this department at that time. She only learned from an acquaintance who is a doctor in this hospital that children can be treated here, but, “Palliative care, what do you mean? I don’t know.”
She actually took Peng Peng to the palliative care department on June 21 this year.
At that time, the child began to have a series of fevers again and again. In the medical field, this symptom is called “malignant hyperthermia”, which is a symptom caused by intracranial tumors. Common treatment methods cannot lower the patient’s body temperature. Internal fluid buildup, thereby relieving symptoms.
Because Peng Peng was too young and his blood vessels were not well developed, he could not bear repeated needle injections for a long time, and mannitol had to be administered intravenously. Therefore, when Pu Wei found Guo Yanru, the strongest demand was to place a PICC tube on the child’s arm and directly puncture the catheter into the superior vena cava for long-term infusion use.
But wanting to insert this tube will bring Peng Peng a far greater risk than ordinary patients. The head nurse Liu Zhijing repeatedly told Pu Wei, she said that the hope of success may only be 100 to 20%.
Pu Wei recalled that that day, she was waiting at the door of the operating room. When the operation was over, and before she got the news, Liu Zhijing had already rushed over from the floor of the hospice department and brought her the good news.
“I was waiting at the door, I didn’t even know it yet, the head nurse went down and told me that it was successful. In fact, to put it bluntly, everyone cares about you, right? Maybe after the successful operation over there, they called the head nurse directly. Call them and tell them, and you can rest assured. Otherwise, the head nurse called and asked, right? It just feels like people care more about you than your family cares about you. “
She always remembered that on the day she and the child’s father first arrived at the hospital, after completing the procedures, the two of them lay on the hospital bed so tired, when Liu Zhijing saw them, she immediately asked, “Can you two be okay? Are you going to buy some food?”
In July, Pu Wei found that Peng Peng had some new symptoms. Sometimes he would feel tense all over his body, his hands were tense, and he was sweating all over. The child can’t speak, Pu Wei and Guo Yanru can only guess, does he hurt?
So Guo Yanru made a medication plan and installed another analgesic pump for Peng Peng.
It was a transparent box the size of a PS game console. It could be used with a battery installed. Guo Yanru told me that half of the morphine in the pump was only 5 mg, worth 3.4 yuan. For a month, the 5 mg of morphine could slowly enter the child’s body at an absolutely precise flow rate and stop him. pain.
Peng Peng’s pain relief pump, a box the size of a PS game console, can accurately inject 5 mg of morphine into a child’s body within a month to stop the pain / Photo by Zhao Jiajia
After using the pump, Pu Wei soon felt that Peng Peng was no longer tense and sweating profusely, and even his malignant high fever symptoms were relieved.
She knew that the tumor was still growing in the child and could take his life from time to time, but he didn’t really look sad now. The PICC tube continued to inject mannitol into Peng Peng, which relieved his intracranial fluid accumulation. His head, which was originally tense like a ball, gradually relaxed, and the use of an analgesic pump further relieved his pain.
Although it is difficult for others to tell the difference, Pu Wei told me with certainty that since July, the child’s mood has been much better than before. She said that Peng Peng is now “especially loving music, really.”
That afternoon, we were sitting in the ward chatting, the sun came in from the window, and Peng Peng was lying on the bed listening to the nursery rhyme on the phone. He doesn’t make a fuss, just smacks occasionally and eats the cheese sticks his mother feeds him. It was quiet all around, only the nurse sister came in every once in a while to look.
She said that she now knows that the existence of this department “is to relieve the suffering of such patients who have been sentenced to death.”
In the palliative care department, patients play cards in the ward / Photo courtesy of the interviewee
I asked her, the living situation of this department is worrying, if one day it is forced to close, how do you feel? She immediately glared at me and said, this is definitely not possible, “I am a person who loves to fight injustice. If it is like this, I will definitely not be the first to accept it.”
Fortunately, Wang Zhaofa is here, and the palliative care department of Cangzhou People’s Hospital is there.
He hoped that Guo Yanru would have more confidence, “The hospital itself is a place to save lives and help the wounded. I think within the range that the hospital can bear, it is still willing to reflect the hospital’s feelings of saving lives and helping the wounded. At present, the hospital still has the ability to do so, and we are still willing to do so in this regard. Support its professional development and invest further resources. No problem with that, no problem with me.”
But Wang Zhaofa also knows that not every hospital leader has the perseverance to withstand the pressure.
On November 30, 2021, the first palliative care center in Wuhan established by Ji Guangwei was officially closed. In fact, like Guo Yanru, he was a doctor who did his best to promote the standardization of palliative care, but in the end he still After receiving the shutdown order issued by the higher-level hospital, he didn’t even figure out the specific reason behind the order.
When I was in Cangzhou, together with Guo Yanru, Liu Zhijing and Ji Xiaoliang, I drove to Qingxian County to express condolences to a patient who passed away in the early morning of the same day. I mingled among them, perhaps being seen as a nurse.
As soon as we entered the door, the deceased’s wife and daughter, who were originally emotionally stable, began to cry with Guo Yanru and the others. I heard the relatives and friends of the deceased say that you are really a good group of doctors, “If I had gone to you earlier, I would not have had to suffer so much.”
After we left, I noticed that the head nurse was in tears for a long time, and then I overheard her say that her father was the same age when he died of lung cancer, and that she was 21 years old, about the same age as the deceased’s daughter.
Guo Yanru and Liu Zhijing, whose parents have passed away, actually know better than anyone how important it is to let a dying patient die with dignity. And at the same time, they know better than most of the difficult times in which palliative care, a business so closely related to everyone’s death, is going through.
Guo Yanru is examining Peng Peng’s body / photo by Zhao Jiajia
On the evening of September 20, I sat in the head nurse’s office and ended a full day of interviews. At that time, I was very tired. In the dimly lit room, many of the stories that Sister Liu Zhijing told me had become hazy distant memories. But I still vividly remember her last look at me with those tired but watery eyes.
I heard her say, help us.
(At the request of the interviewee, Pu Wei is a pseudonym, Ren Xiaojuan and Li Meihua also contributed to this article)
1. Wei Qian. Hanging on the analgesic pump, his last dance with his wife in red shoes in the Anning Ward [N]. Sanlian Life Weekly, 2022-8-26
2. Tian Qiaoping. Where is the road for tranquility care? [N]. Changjiang Daily, 2021-11-09
3. Ji Guangwei, Huang Ying. The current situation and prospect of the development of palliative care in my country [J]. Journal of Practical Medicine, 2021
4. Tian Dongliang. How did this hospital in West China make palliative medicine a provincial key discipline? [EB/OL].2022-03-05
5. Zhao Yue, Liu Lanqiu. British and American community home palliative care service model and its enlightenment to my country [J]. Chinese General Medicine, 2022
6. Wu Yumiao, Feng Dianxu, etc. The evolution and development of palliative care service policies in China [J]. Medicine and Philosophy, 2020
7. Beijing Living Will Promotion Association. The latest progress and policy analysis of palliative care [DB/OL]. 2022-10-13