"I often remind myself that my presence is already the greatest gift to them."
Written by | Ling Jun
Source | "Medical Community" public account
After being rated as the deputy chief physician in 2005, Shen Wei, a medical oncologist at Shanghai Xinhua Hospital, was promoted to a halt.
In her words, because "outdated". Implicitly, it is "disconnected". "The profession has not kept up, and once the age has passed, it is difficult to evaluate (title)." In the past decade, the frontier progress in the field of tumor treatment has blown up, but Shen Wei is doing another thing, caring for those patients with advanced cancer who can no longer be cured.
"Care" here, originally referred to as palliative care, is later translated as palliative care or palliative care because it is difficult for patients to receive it. In June 2001, Shanghai Xinhua Hospital cooperated with the Li Ka Shing Foundation National Hospice Medical Service Program to establish the first hospice nursing home in Jiangsu, Zhejiang and Shanghai, which mainly promoted free home-based service.
The absence of a ward means that even the bed fee cannot be charged. Shen Wei still said that he did not understand why Professor Chen Qiang, who had been the vice president, accepted and pushed this service, nor did he know how he responded.
"Maybe it can only be described by feelings." In the past 20 years, more than 7,500 families have entrusted the end of their loved ones' lives to Shen Wei's team. The heaviness of the responsibility, with the passage of time, she slowly has experienced, and has become the motivation to persevere.
Chongming Branch of Xinhua Hospital Hospice Outpatient Building
pain
Cancer pain is a barrier that most patients with advanced cancer cannot get around.
In 2002, the World Health Organization updated the definition of palliative care to prevent and alleviate suffering through early assessment and treatment of physical, mental and other problems.
Curled up on the bed, unable to move in a cold sweat. "Suffer." As the director of the Chongming Branch of Shanghai Xinhua Hospital (hereinafter referred to as Xinhua Ning Nursing Home), Shen Wei has seen too many elderly people and children at the end of his life clinically, and the pain is repeatedly poorly controlled. "Pain, how much pain is it?" They cannot accurately describe it to the doctor. Pain is graded from 1 to 10 in the numerical scoring method, but many people have no concept of numbers and do not work. ”
Pain is the subjective feeling of patients, 20 years of clinical exploration, Shen Wei has turned boring numbers into specific items familiar to patients. "Like a farmer who is good at growing rice, we grade the rice he is familiar with according to quality, and let him describe which level of rice the physical discomfort corresponds to."
In children, pain assessment may be based on colors arranged according to preference, or it may be a toy. Each doctor and nurse meets about 40 patients every month, at least once every 4 weeks, and each time can not be less than half an hour, to ensure sufficient time for communication and dynamically adjust the individualized pain relief plan.
Director Shen Wei went to the door to guide patients in the use of analgesics (courtesy of Chongming Branch of Xinhua Hospital)
In addition to the body, there are also sometimes mental pains. When the patient is in good shape, the medical staff will sit down and talk to them about their hobbies, hobbies, and life and death.
Psychological counseling accounts for one-third of the daily work, and medical staff should specially train psychology and communication skills, and emotional communication runs through nursing, so that patients can get peace of mind. "Why the emphasis on 'sitting'?' Standing ' will have a sense of oppression, giving people a feeling of being in a hurry to leave. We want our patients to think of us as friends to talk to. ”
The details sound simple, but Shen Wei didn't know what to do at first. In 2001, palliative care, which had been developed internationally for decades, had just been introduced to China.
The public is also ignorant. Humanistic care, listening too vain. In oncology, families often see doctors as "saviors." After taking over the work of the hospice, What Shen Wei heard more can be summarized as, "Feel free to do it, you don't have to tell me what you want, you let him (her) not hurt anyway, we don't have to bother." ”
"The patients who came here have basically been judged to have a survival period of no more than half a year, experienced repeated disillusionment of the hope of early treatment, and finally went nowhere, and the resentment also followed."
In the first 10 years of the establishment of the hospice, Shen Wei felt that it was the most arduous 10 years. "We don't do etiological treatment, we don't have infusions, we don't have a life support system, and people think, so what do I send patients to?" Or do we know it ourselves? ”
In order to solve these problems, Shen Wei focused almost all his work energy on the hospice, during which he went to Hong Kong, Taiwan and overseas hospice institutions for further study.
"The premise of humanistic care is the basic skills of medical technology. Patient pain should be controlled; cough and wheezing should be relieved; ascites and pleural fluid should be disposed of, and long-term bedridden skin damage should be dealt with; depression and anxiety should be involved in professional psychological treatment. Until the end of the near death period, you also have to help him or her calm down and let the patient leave peacefully. ”
Over time, the team can deal with more and more symptoms at home, catheter care, fatigue care, pressure ulcer treatment... A total of 12 somatic symptoms have corresponding standard home care procedures. Many families have also begun to take the initiative to find it, give up meaningless treatment, and get physical and mental tranquility and comfort at the last moment of life, and gradually be accepted by the public.
Healthcare workers examine bedsores in the back of bedridden patients
By 2010, Xinhuaning Nursing Home's homogeneous service process has penetrated through analgesic treatment, nursing guidance, psychological and grief support and other palliative care. At that time, due to the continuous expansion of medical resources in Downtown Shanghai, the team turned its attention to the relatively poor grass-roots areas.
In January 2011, the hospice was relocated from the city to the Chongming Branch of Xinhua Hospital, 100 kilometers away.
reconciliation
67-year-old Wang Aifen (not her real name) may be more unable to accept the fact that she is paralyzed in bed than her unknown death.
I worked all my life, did laundry, cooked and cleaned, and took care of the affairs of the family. "The old man can't even get off the stove." Now that the lower body is unconscious, everything needs to be taken care of, and Wang Aifen cannot adapt to such a role change.
In 2018, she was diagnosed with liver cancer and underwent surgery and interventional treatment. In June 2021, the tumor metastasized to the spine, compressing the nerves. After the doctor euphemistically said that it had lost its therapeutic significance, the family returned to Chongming's home.
Like a good girlfriend, Sun Ying, a medical social worker at Xinhuaning Nursing Home, will whisper to Wang Aifen at the bedside, listen with her ears, help her wipe her tears, and then share the cooking skills that the old man has just learned, and talk about the parents. After a lifetime of, it's time to rest, just relax and let them do it.
Medical social worker Sun Yinghe and Wang Aifen exchanged
Uncle Liu, 73, is a terminal patient with bladder cancer, and his reconciliation with life and death is more direct. "If you accidentally fall, you will die." "If you can't eat, you'll die." With a certain self-esteem and disdain of traditional men, he does not shy away from talking about death.
Sun Ying also laughed along with his words, "The more old people like you say, the longer they live." A good mentality naturally lives a long life. "But every time before leaving, Sun Ying will become serious again," said the latter, but usually pay attention to it. If something really goes wrong, the family will suffer too. ”
Medical staff accompanied the patient Uncle Liu to chat
"Why push home service? Most patients end up wanting to return to their familiar environment, have a sense of belonging and security, and be comfortable venting and expressing their emotions. Shen Wei said, "What you want to eat and burn, what you want to take, for the patient's family, it is more convenient to take care of." ”
Whenever someone dies, the team will also invite family members to participate in the event, and everyone will get together and pour out their hearts to each other.
"I love you, forgive me, I forgive you, thank you, all the way, goodbye." Like the slogan printed on the front page of the hospice brochure, they hope that in the process, the family will be able to put it down and be relieved.
Xinhuaning Nursing Home's "Peace of Mind Card"
But it's not just the patient's family that needs to reconcile with itself. After moving to Chongming Island in 2011, the team made some adjustments. The driver, Yuan Jun, joined at that time.
For 10 years, 400 kilometers a week, Yuan Jun knew almost every country road on the island. But after the first three months, he never got out of the car in front of the patient's house again. "The change is too fast, maybe the last time everyone was still talking happily in the yard, and half a month later people were lying in bed." I couldn't stand it in my heart, and I didn't want to see life and death anymore. ”
Head nurse Shi Lixia called the first three years a confused period. After that fresh energy, she began to doubt the meaning of the job.
"It turns out that in cardiology, patients are 'lying in and walking out'. In hospices, you know exactly how each patient will end. Make an emotional connection with them, but feel like you can't do anything, and every month it's like saying goodbye to groups of familiar friends. ”
Sun Ying, the oldest, became a psychological mentor for young people. People often sit down and talk about which patients are getting better after care. If you want to complain, say it out loud, have a catharsis in your emotions, and gradually reach a consensus, personal life outside of work, don't think about these issues.
Medical staff "share feelings" (Courtesy of Chongming Branch nursing home of Xinhua Hospital)
"Hospice care requires not only professional medical skills, it also requires more love, responsibility and empathy." What made Shen Wei happy was that although the treatment was almost the lowest of all the medical departments in the hospital, everyone persevered.
Shi Lixia can now calmly deal with these emotions, "I will often remind myself that my presence is already the greatest gift to them." ”
Dilemma
At the end of February 2012, Yu Zhengsheng, then secretary of the Shanghai Municipal Party Committee, publicly replied to the appeal of Mr. Qin, a Shanghai citizen, making many people think about the needs of patients with advanced life for the first time.
Mr. Qin's father was diagnosed with lung cancer, in critical condition, has lost the opportunity for surgery and radiotherapy and chemotherapy, and has been repeatedly asked by the hospital to transfer. Mr. Qin sent an open letter on the Internet, putting forward demands and suggestions such as "providing a dignified, stable and safe medical environment for patients with advanced cancer".
In his reply, Yu Zhengsheng called Mr. Qin's experience "the harm of institutional deficiencies" and said that he would promote the care of patients with advanced cancer. In the same year, Shanghai included "hospice care" in the municipal government's practical projects, requiring 18 community health service centers in the city to provide palliative care combining home and hospitalization for terminally ill patients.
Nearly 10 years on, "it's hard to move forward, but it's not as good as expected." ”
Medical staff come to the door to guide the patient's skin care (Courtesy of Chongming Branch Hospice of Xinhua Hospital)
In Shen Wei's view, hospice care emphasizes "small institutions, large homes", and the team of the tertiary hospital should explore a set of standard programs, and the grass-roots medical institutions should refer to the roll-out implementation. Since 2012, Shen Wei has been involved in the formulation of hospice standards in Shanghai, providing Xinhua Ning nursing home with more than 10 years of experience in treatment, management and talent training.
In the past decade, more than 300 grassroots medical staff have come to Xinhua Ning Nursing Home for internship training, "but because the service quality of grassroots medical institutions cannot meet the needs, most patients who need hospice care are still running back and forth in the outpatient emergency department of the second and third level hospitals." Shen Wei said.
Why do big hospitals teach, and what are the dynamics of small hospitals? This is an unavoidable problem in hospice care in practice.
Xinhua Ning Nursing Home is part of the Li Ka Shing Foundation's public welfare project, and the funds for drugs and activities are borne by the foundation. There are also many pioneers in China who have insisted on the cause of palliative care for many years, but because the value of the service cannot be reflected in the charges, most departments still have to carry out some etiological auxiliary or other treatment service charging items to barely maintain normal operations.
"The career of doctors will also be greatly affected, spending a lot of energy, but not in the assessment system." Shen Wei said, "Topics, scientific research, the number of beds, the number of emergency departments, the number of outpatient clinics... Compared with the doctors in the third-class hospitals in the same year, I can say that there is nothing. ”
After coming to Chongming Island with the hospice in 2011, Shen Wei's life became more monotonous. Busy day work, the evening is used to learn, the evil to make up for the fall of the tumor frontier knowledge. "After 3 years, I also made up for a digestive tract tumor, and everything else couldn't keep up."
In Shen Wei's view, although the hospice cause has continued to develop in China in recent years, there are still weaknesses, lack of clear paths in personnel training, unclear career prospects, low income, pressure, more pay, and low sense of belonging.
Therefore, when new members join the team, Shen Wei will first talk to them about life planning.
"If you want to make money, if you want fame and status, you don't need it. But I'll also tell them that when a door closes, there's always a window that opens. Shen Wei said, "The patient's review of the meaning of life, the joys and sorrows, successes and failures, but also purify our hearts, affect our attitude towards our children, the elderly, and people to get along with each other." ”
"As long as you can find this window, your heart is balanced."
future
A sound hospice care system means that at least 20% of cancer patients die after receiving hospice care. After the relocation of the Xinhuaning Nursing Home, this figure reached 15% on Chongming Island.
"But looking at the whole country, can it reach 2%? Not easy to say. According to the latest edition of the 2021 International Expert Assessment of The Quality of Death, Taiwan ranks in the top three, the Hong Kong Special Administrative Region ranks ninth, and the Chinese mainland ranks only 53rd.
In the early years, when he visited the Hong Kong Ripley Hospice Center, Shen Wei saw the high-quality and high-quality whole-person medical care model for the first time.
When treating wounds, if there is an odor, the nurses will light an aromatherapy. The patient was in a bad mood, and soothing music sounded in the ward. The hospital is also equipped with a special bathing center and a catering room, and the medical social union assists the nurses to push patients with reduced mobility to the bathroom, help wash, get dressed, and spray some perfume. Whatever you want to eat, the catering center can also prepare at any time.
Shen Wei believes that the key to the future development of disciplines is to find a way to operate benignly. "The level of treatment, the service attitude, the management order, the supporting facilities... No one wants to see a loved one suffer, and if palliative care doesn't meet a qualifying standard, even if you're willing to do it, the patient's family won't accept it. ”
Even if there are few economic benefits, fortunately, several leaders still support this work. But Shen Wei also knows that playing iron also needs to be hard. In 2015, after the work arrangements on the island were proper and the team medical care could be independent, Shen Wei returned to Xinhua General Hospital to engage in gastrointestinal tumor internal medicine treatment. But until now, she still has a lot of work energy invested in the hospice.
Weekly work report, quality control supervision, and year-end summary and optimization of management systems and processes. "We are very proud, after 20 years, hospice has become a brand of Xinhua Hospital." Shen Wei will often think of the instructions given to her by the old dean before he retired--when I am too old to take care of myself, I will also hand it over to you. You have this philosophy and technology, and it won't make me miserable.
From a three-year-old child suffering from retinoblastoma to a centenarian paralyzed in bed, in the past 20 years, Xinhua Ning Nursing Home has provided more than 100,000 times of service, traveled more than 400,000 kilometers, and distributed more than 20 million yuan of drugs free of charge.
(Photo courtesy of Chongming Branch Nursing Home of Xinhua Hospital)
But Shen Wei still wanted to take another step forward. She said that the hospital has set aside four beds in the main hospital of the city and plans to provide paid inpatient services for families with special needs from next year, supplementing the existing free nursing services.
"The medical behavior that can be carried out at home is still limited, and for some patients whose pain is repeatedly poorly controlled, and even have symptoms that are life-threatening, I want them to be admitted to the hospital for a short time, provide better medical resources, and at the same time allow their families to breathe."
But where does the new care come from, and what kind of management and treatment model is adopted? How do I integrate with existing resources? Shen Wei was still thinking about these things from time to time.
"It's like exploring the way for this discipline." For the cause that has persisted for 20 years, Shen Wei thinks very clearly, "No matter what class of people, life, old age, illness and death, the laws of nature cannot be avoided. And what we have to do is to pull the patient when they are most miserable, so that they can walk the last part of the road calmly and with dignity. ”
Source: Medical community
Editor-in-charge: Zheng Huaju
Proofreader: Zang Hengjia
Plate making: Xue Jiao