Interview and writing | Li Yu
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In my country, vegetative patients are a group that is easily forgotten. The hospital is unwilling to admit treatment, and the nursing home does not accept it. Most vegetative people can only be taken care of by their families at home. Because family members often lack nursing knowledge, dying prematurely and sadly is the final result of many patients.
In 2015, Xiang Jiuda resigned from his job as the outpatient director of the Miyun District Hospital in Beijing and founded the only vegetative care center in China, providing another option for vegetative patients and their families. In more than 7 years, more than 200 vegetative patients have continued their lives in the center and peacefully completed the last journey of their lives.
For Xiang Jiuda, this is a lonely and difficult road. As the "ferryman on the edge of life", he said that every time holds up the dignity of a vegetable, it is equivalent to placing the heart of a family.
The world of vegetative people
At 11:30 p.m., the ward of Yansheng Nursing Center is still bright.
Nine patients "slept" deep under the light, arranged from the eastmost side of the room to the westmost side of the room. The lights were as vast as snow, reflecting on the skinny face, but there was no sign of awakeness. There was no whispering or snoring in the ward, only a faint buzzing sound was coming. It was the sound of the oxygen generator . Apart from that, nothing could be heard.
This is an ordinary night in the Yansheng Nursing Center. These patients are all vegetative patients. The peaceful ward is like an empty valley. People who visit for the first time will inevitably feel suffocating and depressing. However, for the 53-year-old Dr. Xiangjiuda, he had long been used to such a scene.
Maintenance Center Ward/Photo source interviewee
Yansheng Nuoda founded by Xiangjiuda is located in Miyun District, Beijing. There are 41 vegetative patients living in this secluded rural courtyard. The oldest is 84 years old and the youngest is only 38 years old. They either had an accident or encountered an emergency, and fell into a deep sleep. The unconscious body was like stranded fish, imprisoned on a hospital bed of four or five square meters. From sunrise to sunset, there was silence in twenty-four hours.
In the fairy tale world, if the princess wants to wake up, she only needs a gentle kiss. Unfortunately, reality is not a fairy tale. Patients who are stuck in the state of have almost no possibility of recovery again. A life that cannot wake up is like a withering and withering flower, quietly sliding towards death.
is the only one who has been by their side: she is on standby 24 hours a day, helping patients defecate, feed, clean wounds, and wipe their bodies. When the patient suddenly coughs, the nursing staff immediately knocks forward on his back to relieve phlegm; every two hours, they will take the initiative to help the patient turn over, and the patient maintains this position, as if he has pressed the pause button until the next care comes.
There is no pain, no sorrow and joy, and even the day and night, there is not much difference in the vegetable world.
When patrolling the ward, Xiang Jiuda was always careful, gently lifting the water cup, gently putting it down, quietly standing up, and whispering softly when speaking. clearly knew that the patient knew nothing, but he was still worried that he would cause trouble.
A dog barking came from afar. The domestic dog in the village woke up, but after a few sounds, he suddenly returned to silence again. Xiang Jiuda stared out the window for a long time, and the boundless darkness was also staring at the window, looking at each other, and a night passed quietly.
Vegetatives are not dead
Before the age of forty-five, my long-lasting resume was not eye-catching - I studied step by step and graduated step by step, and naturally entered the Miyun District Hospital in the suburbs of Beijing, and served as the director of outpatient surgery in my forties. Everything comes naturally, like a small river, flowing lightly along the established direction, unchanging and unstable.
XiangjiuDaDu/Photo source interviewee
However, after decades of life, it is inevitable that some unconventional ideas will arise. When I was a front-line doctor, I looked at the medical records and test sheets day and night, and I wore a white coat for a long time. I often felt a sense of powerlessness when I was trapped in the same place after a long time. After taking office as the outpatient director, he bid farewell to the stethoscope and lancet , and fell into the sea of writing and meeting day after day, and his sense of powerlessness became particularly serious. The fear of seeing the head at a glance in the future is always chasing behind him. Over time, he began to think of quitting his job and starting a business.
But what can I do if I resign? Even Xiang Jiuda couldn't explain it clearly.
There are very few doctors who start a business, and even fewer doctors who have successfully started a business. In the eyes of most people, a doctor is a special profession. It is like driving into a high-speed tunnel. You can't retreat or turn around. There seems to be no other choice except driving at full speed and moving forward.
turns in 2014. Miyun District Hospital admitted a patient with brain stem hemorrhage. Although the medical staff tried their best to save his life, they kept him from regaining consciousness. If the patient has been hypoxia for too long, the patient has become a vegetative person.
Since it is destined to be unable to wake up, in the eyes of the hospital, there is no value for continuing rescue. "It is recommended that the family members go home to take care of" is more like the hospital's elegant remarks on the "exit order". The patient passed away at home three months later. After a long time, he recalled, "The body was covered with bedsores and everyone was smelly." The ending of
is a pity, but it also made Xiang Jiuda discover a potential market . Hospitals can hardly admit vegetatives, nursing homes can hardly accept vegetatives, and the patients' families lack professional nursing knowledge. He suddenly thought, since no one is willing to accept them, then isn't it enough to accept them by himself?
So in 2015, Xiangjiuda officially quit his job in the hospital and created the first vegetative care center in the country with the 2 million yuan raised from selling the house.
initially wanted to drive in the city. Unfortunately, he ran from , 2nd Ring to outside the Sixth Ring 6, and contacted several addresses, but they were rejected without exception. The closest success was that Xiang Jiuda had already paid a deposit, but the owner finally regretted it.
The reasons are similar, but they are simply because of "bad luck". Some people say it is unlucky to rent a house to a dead person. After a long debate, vegetatives are living people, so there is no problem for living people to rent a house, right? The other party immediately replied that vegetatives are waiting for death, how can those who are waiting for death be called living people?
hits walls everywhere, causing Xiangjiuda to fall into confusion for a while. He repeatedly explained to others: "There is no difference between a vegetative person and a newborn baby. Babies don't know anything, and vegetative persons don't know anything. Babies need people to take care of, and vegetative persons also need people to take care of." The city has full confinement centers, so why can't vegetative persons even be considered human?
The urban area could not accommodate him, so Xiang Jiuda had no choice but to turn his attention to the remote suburbs. Finally, a friend helped him find a place to stay.
A small building halfway up the mountain is thirty kilometers away from Miyun urban area and 90 kilometers away from Beijing city. You can look out at the Yanshan Mountains and Miyun Reservoir from afar. In addition to the singing of birds and fragrance of flowers, what is more important is purity. Purity means staying away from people, and staying away from people will lead to a lot of gossip.
Xiangjiu General spent half of his cash on decoration and found seven more nurses. On the first night of the opening of the maintenance center, the lighting lights lit up one after another in the ward. In a daze, it seemed as if rain hit the wall one by one, with a very scent of "a raincoat and mist and rain will last forever".
was about to feel aroused when suddenly, a power outage in the mountains and darkness came again, and suddenly, he couldn't see his five fingers.
Lonely career
Insufficient power is actually a small problem. Although it happens every now and then, only one generator is needed to solve it. What really bothers the vegetative care center is that the vegetatives cannot be found.
For quite a long time, Xiaocong was the only patient in the nursing center. The sudden disaster in 2012 not only caused her to lose half of her lung lobe, but also caused her family to fall asleep. Just when the whole family was desperate, someone introduced the nursing center that had been around for a long time.
Seven nurses, plus the age of old age, eight people gathered around a small hospital bed all day long. They went to see it once every three hours, then once every hour, and finally they went to see it once every time they were free. The curve on ECG rises, sinks, rises, and sinks again, silently and endlessly. Before you know it, you can stare at it for a day.
When she just resigned, Xiang Jiuda made a private calculation - if you want to balance income and expenditure, sixteen patients should be enough. After twenty years of practicing medicine, he has accumulated many connections, and this number is not an exaggeration.
is a patient recommended to a nursing center. For a long time, Xiaocong was the only one. When you contact your former colleagues and friends, the answers you get are often ambiguous, "Wait a little longer" and "Let's talk later". He couldn't sleep at night for a while, but now he was relieved. "This is actually easy to understand. No one has ever heard of this industry. Who dares to leave someone to you with confidence? What should I do if something happens?"
So my long-term job is to take care of Xiaocong and study Chinese and foreign literature in order to take care of Xiaocong. The days in the white coat and the lancet seemed to be yesterday. I was tired, and rubbed my eyes. In a trance, I could still see the whistling ambulance and the nurse and doctor in a hurry. When I woke up, I realized that everything was just an illusion. Xiaocong was still silent, the mountain wind seemed to whistle, and the birds were singing as if they were laughing. He knew that she had no perception of the changes around her, but sometimes she would still involuntarily think about it after a long time, but in fact, can she feel some of it?
Vegetative patient/Photo source respondent
Unfortunately, Xiaocong never responded at all. There are only quiet mountains and forests outside the quiet ward. After a long time, I can’t do much in a day. I do it, stop and stop. After a long time, the feeling of anxiety slowly emerges.
In addition to loneliness, lack of money is also a real trouble that we have to face at all times.
Xiangjiuda began to post advertisements on the Internet. He registered a Tieba account and shared the news and knowledge about vegetative care on the Vegetative Post Bar, and also introduced his vegetative care career. He left a message saying that if there are vegetative families who need help in urgent need, please feel free to contact us. By the second year, the number of patients finally increased exponentially - reaching three. It's still far from the original goal.
When there was no future and hope, half of the nurses chose to leave one after another. Xiang Jiuda expressed his understanding of this. Although it is respectable to be ambitious, life cannot be separated from food, food, oil and salt. He continued to choose to persist, not because he didn't care about the food, rice, oil and salt. He admitted that he just couldn't leave.
As for the reason why he couldn't leave, he said: "This is different from opening a hotel. If the hotel doesn't open, it won't open. At worst, you can just return the money to others. But vegetatives are different. Vegetatives are not commodities. The family entrusted me. Can you say you can return it if you return it? You can't open this mouth."
Hippocratic oath said: I want to let myself remember that I am not treating a patient's fever, nor is it a malignant tumor itself, but a living person. And Xiang Jiuda's words are extremely simple, "There is no way, I can't stop this at all."
The meaning of vegetative care
When I was still a doctor, Xiang Jiuda often had to pass the old emergency building of the district hospital. Before the millennium, there was a line of bright red words on the building: Learn the spirit of Bethune. He never thought too much about it when he passed by the big words. The oath of saving lives and helping the wounded is like the smell of disinfectant in the ward, which is natural and natural.
After leaving the hospital , found that saving lives and healing the wounded is unlikely to be realized in the nursing center. The work of vegetative care is more similar to tranquility care and hospice care. When the final result is already destined, how to make the whole process more decent is not only about the dignity of vegetatives, but also the trade-off between reality and ethics of the family.
For Xiaocong's family, it is not just Xiaocong himself who lost his life. From the day of the car accident, his lover Xiaotang's life was also forced to draw a rest. He quit his job, steered in the ward for 24 hours day and night, ate in the ward, slept in the ward, patted his back, turned over, and fed. The exact same life was repeated for two and a half years.
However, the growth and material pressure of her daughter will not change anything due to Xiaocong's stagnation. When everything is unsustainable, Xiaotang has to make a choice between the status quo and the future.
The day when Xiaocong was sent, Xiang Jiuda said, "Don't worry, we promise to take good care of it." When hope gradually turns into a bubble, those who survive will eventually have to work hard to survive for new hopes.
Later, Xiaotang went to the south and started his interrupted career again. His visit to Xiaocong became intermittent. Occasionally, he always held his mobile phone to the girl far away. The child broadcast live, he said, "Call mom", and then stared at his wife on the bed, and was silent for a while.
At the same time, more and more patients were received, and Xiang Jiuda began to silently think about the positioning of nurturing work. He felt that although vegetative people lost their mindset, they were not death, but a special state between normal and death.
Therefore, they were like standing on a small boat, gently shaking the paddles, bringing the patient from this shore to the other shore, leaving only the family members standing silently and silently, watching them leave quietly. Later he often summarized: "This is a process that allows the family members to slowly accept death. "
Nurse Daily Care/Photo Source Respondent
Someone also raised questions: If a vegetative person does not even have consciousness, is it still important to have dignity?
Xiaoshou Dada answer: Whether a vegetative person has dignity depends on how the people around him treat him.
The other party is different He believes that if vegetatives cannot perceive all this, then fostering is meaningless to vegetatives itself, and it is just that "family members selfishly want to continue the life of vegetatives."
has no right or wrong, but they cannot agree with each other for a long time. He believes that such statements are too cold and rational, and people need emotions: " If vegetatives cannot feel it, fostering is meaningless, then the living mourns the dead, and the deceased cannot feel it. Are our mourning and grief meaningless? ”
In 2018, Xiaocong passed away. In fact, there were some signs in the previous few days, but after spending the loneliest three years together, the nursing staff of Xiangjiu Yamato regarded Xiaocong as a relative. Even though he had done countless psychological construction, the tears still moistened the corners of his eyes.
Xiaocong closed his eyes quietly, as if he was just tired, sleepy, and rested for a moment. Xiangjiuda comforted himself that the death of the body is not the end of life. People also have spiritual attributes. "As long as people are not forgotten, people are still alive. ”
Dilemma and persistence
2019, after all sixteen beds were fully occupied, the center began to barely balance the income and expenditure.Media began to follow up and report on the Yansheng Nursing Center, and many vegetative families came from all over the country. For a time, the center was visited by visitors. Head nurse Wen Jing said: "I have seen very few vegetative people before. I knew that someone would need help, but I never expected so many people would need help."
How many vegetative people are there in China? This is an unknown number. Some experts say that the conservative estimate is at least 500,000, and there are about 100,000 new patients every year. This means that hundreds of thousands of families are silently suffering and suffering in the corner where no one pays attention. The long-lasting care center is like a candlelight, emitting a little light to them in the darkness.
But reality is like a complex and tortuous math problem, and the funding problem is still entangled and troubled by Xiang Jiuda: the ward is full of stuffed, and there is no more space on the mountain. If patients are to be taken in, relocation is the only option. While relocating
, it also means that more capital investment is needed. Xiang Jiuda had to mortgage another property, renting, renovating, and purchasing instruments. He started his business for more than four years and investing more than four years, but he still didn't know when he could see the return on five million funds.
Finally, Xiangjiuda finalized a new address in Shengshuitou Village on the edge of Miyun urban area. He did not hang signs or set up road signs, allowing a courtyard to quietly hide in the alley. Compared with the bustling and noisy Nanshan Ski Resort in the distance, the maintenance center is like an unwelcome wild daisy .
However, those who need it will naturally find it. Forty-one beds are quickly filled with patients from all over the world, and separation from life and death is still the norm at work.
Long Yingtai wrote in "Watching": The so-called father, daughter, mother and son are just that your fate with him is to watch his back gradually fade away in this life.
For many families, the maintenance center is where this back finally disappears. Many people escorted their families here, reluctant to leave, looked back, left, and when they appeared again, they had already said goodbye to the funeral home.
Over the years, more than 200 vegetative patients have come here one after another, without miracles or pain, and have peacefully completed the last journey of their lives in the center.
The farthest patient is from Shenzhen. The daughter took care of the vegetative mother alone for eight months until her life completely collapsed and she could not find a place to go, so she had to ride 120 from south to north. The sound of the ambulance, like an anxious cry and a sad song, sounded solemnly through the city village, and stayed in front of the hawthorn tree in the courtyard. When the song ends and people are separated, the mother and daughter are separated from each other, no matter spring and summer, they will never meet again.
Even though I had been old for a long time, I couldn't forget the 90-year-old man. After watching his son enter the ward, the old man stood under the red wall, his hunched figure was like a piece of broken paper cut, and then he staggered out of the courtyard and passed through the courtyard gate.
The dust raised by the wheels blows the corners of the clothes. The old man turned around tremblingly, took off his hat silently, and bowed deeply to Xiang Jiuda, which reminded Xiang Jiuda of "Back View" by Zhu Ziqing.
banner sent by the patient's family/photo source interviewee
Xiang Jiuda admitted that at the beginning he was just for the start of a business and never considered the significance of a vegetative care center. Later, he gradually realized what he did, "maybe it has some social significance."
In 2020, Xiang Jiuda was selected as a candidate for " Touching China ". However, behind the touching China, there are still difficulties in the financial difficulties and layers of obstacles to continued development.
The new ward has been started, but it cannot continue due to lack of money. It has been renovated intermittently for a long time, but it has only been half of it. Because he didn't want to raise the price and couldn't get other support, two years later, his long-lasting career was still on the spot.This situation also scared away investors from all over the country who came to inspect, so until now, there are still only Akaku Yamato's care centers that can accommodate vegetative patients.
Nowadays, I often suffer from insomnia. When I don’t work, I have to stay up until the second half of the night. I can’t move two packs of cigarettes every day, which is sometimes not enough. He hopes to develop and accommodate more patients, and he hopes that all parts of the country will build a shelter for vegetatives. However, his vision hits a wall in the cracks of reality. He has long admitted that he sometimes feels very stressed.
He began to try to treat himself, holding a guitar, moving a chair, and sitting in the ward and singing softly. Although music therapy is a genre of vegetative care, in Xiangjiuda's eyes, the greater significance is to help living people.
"We have wandered all day long/on the green mountains of our hometown/we have also experienced hardships/running around and wandering around."
Sitting in the world of vegetative people, witnessing the continuation of life one by one, and the worries of reality are also destroyed on the strings.
Xiang Jiuda said that he had never regretted this career, just like he once argued with others: These are living people, as long as they are not forgotten, they will always exist.
