In the hospice ward, Lu Guijun crouched in front of the patient's bed and talked. Courtesy of respondents
At 11:30 a.m. on March 18, a farewell ceremony was underway at the "Past Room" of Tsinghua Chang Gung Hospital in Beijing. Three doctors from the hospice team stood in the solemn crowd and bowed to the deceased. In the fragrance of lilies, the remains of the deceased stretch out, looking decent, calm, and painless.
Since the formation of the hospice team in 2019, such farewells have occurred about 200 times. The doctors of the hospice team no longer make it their vocation to fight the grim reaper, and the terminal patients who live here will not struggle in vain in the pursuit of false hopes of "cure" and "improvement". When it is impossible to extend the length of life, it is the core goal of palliative care to make every effort to expand the thickness so that patients can say goodbye without pain, dignity and without hindrance.
"Later in life, patients do not need excessive diagnosis and treatment, but hope to be loved and cared for on the basis of pain relief, and enter another world with dignity." Lu Guijun, head of the hospice team, said. In hospice wards, there is no over-medical treatment and the pain of loss of dignity, nor concealment and blindness to death. The patient is not a person who is dying in the countdown, but a person who has his own will, a living person.
Shelter
Unlike the noisy outpatient hall, the hospice ward on the 13th floor of Beijing Tsinghua Chang Gung Hospital is quiet and cold, as if it were another world.
The corridors are wide open and few people move around. The ward was sinking into a deep sleep, and the faint humming of the inflatable valve of the anti-pressure mattress could be heard. During the rounds at 7:30 a.m., the gentle greetings of the doctors continued the silence: "How did you sleep last night?" Does the wound still hurt?" Lu Guijun gently shook the patient's hand and asked. The patient, who was in better shape, sat up and responded, pointing to his abdomen to describe to the doctor the dull pain he felt, and the pillow next to him was sunken with an oval shape.
In another room, the patient lay still on the bed, his cheeks sunken, his cheekbones protruding, and his neck weakly resting on his shoulders. Through the folds of the futon, you can see the same emaciated figure.
"Don't be nervous, don't worry, I'm here, your family is there." Maybe you're a little uncomfortable right now, but don't be nervous, you'll be fine right away. Lu Guijun's voice was soft, and he leaned down and said in the patient's ear. The last thing a dying patient loses is hearing, and even if the organs and body systems fall one after the other, these words will still soothe him. The doctor's assurance seemed to reassure him, and the patient's index finger was gently raised and moved imperceptibly.
Admitted to the 7 hospice wards are patients with advanced malignant tumors that have lost medical significance and patients with intermediate and terminal chronic diseases. The average length of stay in a ward is about 28 days, ranging from three to five days to three months. Here, death is a crumbling leaf, and perhaps the next gust of wind will fall, perhaps hanging until the following spring. The one-bed ward was comfortable and spacious, and both the patient's clothes and toiletries were neatly packed, as if the owner of the house was about to travel a long way.
"For patients in the late stages of tumor or the end of life, curative treatment is becoming increasingly difficult, but symptomatic treatment cannot be abandoned." Lu Guijun said that in the hospice ward of Beijing Tsinghua Changgeng Hospital, as the first batch of hospice demonstration bases in Beijing, traumatic rescue measures are no longer accepted, pain is relieved, breathing difficulties are alleviated, and fever is reduced. Dozens of members of the hospice team, including doctors, nurses, medical social workers, clinical pharmacists, and folklore experts, help patients and their families, and accompany them through the last journey of their lives peacefully and comfortably.
A souvenir photo album made by the hospice team of Tsinghua Chang Gung Hospital for the deceased patients. Courtesy of respondents
The pain of being heard
In the summer of 2020, Lu Qiong's father, Lu Hengyuan, was diagnosed with advanced lung cancer. Shortly before his father was diagnosed with lung cancer, Lu Qiong's lover's father died of rectal cancer. She described the death as "tragic." In the last few days of his life, the old man was still receiving treatment, and his skin and blood vessels became as brittle as old paper. In addition to the constant sharp pain, the nurse in charge of the infusion long knelt in front of the bed, looking for an intravenous injection point on the patient's needle-strewn and bruised arm, which constituted Lu Joan's initial fear of death.
Lu Hengyuan also looked at such a picture. After two years of at least 20 sessions of radiation therapy and conservative TCM treatment, on March 9, 2022, Lu Hengyuan was admitted to the hospice ward of Tsinghua Chang Gung Hospital. Lying on his hospital bed, he told his doctor, Lu Guijun, that he did not want to suffer any longer.
In Lu Qiong's eyes, her father was a silent person who was used to enduring pain. When he perceives physical pain, he never complains, much less loudly. During the two years of treatment, Lu Qiong began to learn to recognize her father's pain with her eyes, and whenever he gritted his teeth and closed his eyes, his body became stiff, and when he lowered his head and pressed his palm against a certain part, she knew that his father was in pain again.
In Lu Qiong's previous consultation experience, doctors often consult quickly, make plans that are conducive to treatment, and have no time to take into account the patient's feelings. She and her father were only passively accepting medical arrangements and did not dare to talk too much. Unlike other departments that aim at curative treatment, in hospice wards, doctors encourage patients to tell their history of pain and not to be silent victims.
Based on these descriptions, the doctor will make a pain control plan for the patient, explaining the medication that will be used, the dosage, the reason for the medication and the timing of the medication, thereby reducing the patient's anxiety. After 30 years of practicing medicine, Lu Guijun has seen too many patients who have not received appropriate analgesic treatment and are still in pain at the end of their lives. Lu Guijun said that doctors or relatives and friends often encourage patients to "be strong and optimistic", but from the patient's point of view, this may be negative stimulation and pressure. He believes that the popular culture of "tolerating pain is a virtue" is almost a kind of soft violence, and "unnecessary pain tolerance is the indulgence of disease and the accommodation of medical technology".
Two weeks after admission, the persistent pain caused by the cancer had been controlled, and the problem of hoarseness was worsening. Every time he inhaled, Lu Hengyuan could hear the wheezing sound coming from deep in his chest. The wheezing was sharp, and the breathing became short, and the sound of breathing magnified the worry, and he remembered that a doctor had said that it would cause the air to not enter the lungs and die.
"This is unlikely to happen. This is just a symptom of upper airway stenosis. Lu Hengyuan's attending doctor, Li Zhigang, comforted him. As a scientific researcher, Lu Hengyuan is rigorous and careful, and from the beginning of his illness, he has asked to see various examination reports and treatment plans, and will also ask for various pathological information about the body. Li Zhigang patiently explained what would happen in the future, combined with medication control, the symptoms of inhaling stridor were alleviated, and Lu Hengyuan's fear gradually subsided.
People don't just come here to relieve physical pain.
Lu Guijun is also a pain specialist. In the pain clinic patients, about 1/4 to 1/5 of the patients are terminal tumor patients, in the medical system, doctor assistance is often a purely technical intervention for patients, when the doctor for the patient to relieve the pain, Lu Guijun found that many patients are still in a state of pain. He gradually realized that the pain was not only caused by the physical pain caused by the disease, but also the psychological pain of fear of death, regret that the wish was not fulfilled, and the trouble of social relations.
Lu Hengyuan's wife died more than a decade ago, and the only daughter, Lu Qiong, went abroad to study as an adult and worked overseas for many years. Living alone for more than ten years, Lu Hengyuan has entrusted his body and mind to work, and he is also accustomed to showing people with a humorous and clear image in communication. Touching his heart, he never confided in relatives or friends. In the two years of caring for her father, Lu Qiong often watched her father in the hospital bed try to open her mouth, and fell silent again. She and her father had been separated by long years of separation, and two generations apart about the same taboo about death.
"If one day you're going to turn around, what would you like to take with you?" One day during a room round, Lu Guijun seemingly casually asked Lu Hengyuan. "I don't like mourning, I like Pavarotti and want to hear My Sun. When I left, I wanted to see my relatives and friends all in the ward, talking, laughing. Lu Hengyuan's tone was calm, and there was no Zhang Huang on his face.
This was the first time Lu Qiong had heard her father talk about death and his wishes. Lu Qiong squeezed out a smile, just as her father had hoped. She felt that she had finally met her father again. She decided to write a letter, and these days in the hospital room with the bed, she tried many times to write the letter that was interrupted by tears again and again. She had already thought about the content, wrote about her father's life, his past glory, wrote about their past, and the consummation that the future would reach.
Dr Li Zhigang of the Hospice Team presented the deceased patients with a tie and a bouquet of flowers. Courtesy of respondents
Reconcile with death
Lu Guijun advocated that the perception of death should be flattened and softened. In the face of the patient, instead of asking "what do you do when you die", "are you afraid of death", "what else do you want to do", but say "If one day you want to turn around, is there anyone you want to look back", he will tell you accurately, and alleviate the fear and despair of death in the specific thoughts.
In hospice units, many patients are able to die peacefully with less pain. In long-term clinical practice, Lu Guijun found that palliative care at different ages has different characteristics: the elderly have a relatively complete life, have memorable gains and insights, and their unfulfilled wishes are relatively clear; Children are young, their outlook on life and values have not yet been formed, and even if they come to the end of their lives, they still need to spend time in games and fairy tales; The palliative care of middle-aged people is the most painful, can not accompany young children to grow up, can not fulfill the responsibility of caring for elderly parents, can not continue to work with lovers, unfinished agreements... They have too many regrets. And when they have to leave, the grief of relatives, reluctance, and the emotion of "not being able to accept your departure" will also make them more miserable.
In September 2020, 44-year-old Lin Ping was diagnosed with pancreatic cancer. On the evening of October 19, 2020, Zhang Jingyi, a high school senior who had just passed his 18th birthday, learned of his mother's condition.
In the huge confusion brought about by the word "cancer", Zhang Jingyi felt that he was falling towards the past, remembering the past days related to his mother. When he was a child, his mother always washed his hair, she moved gently, her fingers slowly rubbed his scalp, he liked the touch, and when he thought about it, he felt at ease. Mom cooked deliciously, especially Coke chicken wings, and the few minutes he sat at the dinner table and waited for the meal to be served was the happiest moment when he was in school. He thought of the summer 4 months ago, the whole family traveled together for a long time, they went to Gubei Water Town. The weather was clear, the leaves were shining with sunlight, the wind was staining the coolness of the river, and he and his brother walked ahead, and the footsteps of their parents followed them peacefully. It's like every walk in so many years. He remembered walking for a while, and his mother said she was tired. She sat on a chair on the bridge and rested her feet, her hands on her abdomen, saying that her stomach hurt a little. Somehow he took the picture because "looking at my mother at that time, I thought she was very dignified." ”
By then, the cancer was already lurking in the mother's body. "If it is treated as soon as possible, will the results be different", he blamed himself, feeling unforgivable.
Mother's naked eye emaciation went down, the weight lost by 40 pounds in a few months, she was always very tired, the dark circles were getting heavier, and the low back pain caused by cancer bone metastasis could not sleep all night. Zhang Jingyi did not want to believe in the end of the future, and he decided to apply only for universities in Beijing after the college entrance examination, so that he could take a year off to take care of his mother.
Dr. Li Zhigang first met Lin Ping in March 2021. Anger, despair and other common emotions of cancer patients are not prominent in her, she speaks softly, her steps are slow and careful, and she is afraid of causing trouble to others. What makes Li Zhigang remember deeply is that she wears a small flower hat often worn by medical staff, which is bright and beautiful in color, covering the hair that has been lost due to multiple chemotherapy.
During hospitalization, paraplegia symptoms due to bone metastases began to appear: inability to walk, incontinence, and needing the assistance of others to turn over. Lin Ping's fear also deepened, and she frequently called Li Zhigang under the pretext of pain. Knowing that paraplegia is too big a blow to young adults, while taking medicine to relieve pain, Li Zhigang accompanied Lin Ping as much as possible and appeared next to her for the first time when she needed it.
Qin Jiaqi, a medical social worker in the hospice team, also began to intervene in Lin Ping's service. In the practical field of social work in hospice care, social unions provide a variety of services such as emotional counseling, resource links, and grief and comfort. Services that assist patients in completing the "wish list" and combing through unfulfilled wishes run through the patient's entire survival period. During the service, Qin Jiaqi found that the mother was always full of apologies, and when she talked about her happy childhood, she felt remorse for not being able to take care of her parents, and worried that her illness would affect her child's college entrance examination.
Qin Jiaqi linked resources with the team to assist Lin Ping in the ward to complete the blessing of the child's college entrance examination. The day before the college entrance examination, the medical social work team bought her two bouquets of flowers, namely sunflowers and kapok, which means to win the championship in one fell swoop and cherish the people in front of her. That day, Lin Ping was very happy, walking back and forth in the ward, and his appetite was much better than usual.
After the end of the college entrance examination, Zhang Jing began to accompany the bed, accompanied by his mother day and night. Because of the pain and fear, Lin Ping's sleep was shortened to only 2 to 3 hours a night. Unable to sleep in the dark and daytime, she looked through the family photo album and told Zhang Jingyi the story behind each photo: her first time in Beijing to work in the dormitory, her first date with her lover, the first trip abroad. Sometimes she suddenly fell down, "Chen Chen (Zhang Jingyi's nickname), I'm really sorry, my mother can't take care of you anymore." ”
"Mom's all right, we're all here." We take care of you. Zhang Jingyi comforted his mother and held her hand. With the assistance of the social worker, Lin Ping expressed her love and apologies to the child, completing her farewell.
In June 2021, the medical social work team presented Lin Ping with a bouquet of sunflowers and kapok flowers, and doctor Li Zhigang (first from the right) stood next to Lin Ping wearing a "small flower hat". Courtesy of respondents
Give grief a place to go
Palliative care is like the pendulum of an old-fashioned wall clock, tending to the endangered goers and the mournful living. Most people are deeply rooted in the belief that palliative care is "giving up treatment" and "seeing death and not saving", and many family members use rescue to prove their affection for patients or filial piety to elderly patients out of pressure. Families of patients who send their loved ones to hospice wards have similar guilt and insecurity. Doctors need to reduce their psychological burden, educate the families of dying patients, help them adapt to changes in the patient's condition and death, shorten the process of grief, and reduce the degree of grief.
In order to prevent the incurable grief that may occur after the death of a loved one, Lu Guijun said, "We need to give the grief a place to go." ”
Lu Guijun remembers that a 40-year-old patient's family member, Ms. Liu, asked for help. After learning of the fact that her mother was ill, she could not accept that her mother would one day die, "My mother is the most important person in my life, and I don't know how I would live without my mother." She repeated the words.
"You can keep your mother." Lu Guijun told her, "Your mother must have a special dish, and when your mother can still teach you, you must learn it from the selection of materials, ingredients, and steaming." It will help you in the future. After returning home, the lady learned from her mother the method of fennel dumplings. After her mother's death, whenever she missed her, she wrapped herself a meal of fennel dumplings. After replicating the smell of her mother, she felt that she and her mother were not completely separated by death.
After Lin Ping was paralyzed, Zhang Jingyi had to help his mother turn over every few moments, changing from lying flat to lying on her side. Because of the pressure sores on the skin that had been lying for a long time, he had to help his mother wash and wipe, and then carefully apply the medicine. When turning over, it is easy to compress the position of the pancreas, Zhang Jingyi picked up Lin Ping's posture more gently than the nurse, and his mother only let him hold it every time.
The mother became lighter and lighter, her skin was loose and collapsed, the position of paralysis in the later stages of the disease gradually rose, the neck could not move, and swallowing became difficult. Because of the difficulty of breathing, Lin Ping in a coma has been breathing with his mouth open, his lips are dry and cracked, Zhang Jingyi can't bear to look at it again, and hides in the toilet when he is sad, covering his mouth and crying.
The three months of escorting were a long goodbye. Zhang Jingyi remembered that one day Lin Ping told him, "Chen Chen, my mother especially wants to go out and play." Even if I can't move, I want to go out. She pretended to be relaxed again and said, "Forget it, don't go out." Zhang Jingyi held back tears and said that when I go out to play later, I will send you photos on WeChat. Lin Ping was very happy to hear it, and she said that was great.
Qin Jiaqi, a medical social worker, often chatted with Zhang Jingyi, and it was Qin Jiaqi who answered questions about "how to help his mother wipe his body" and "what to do when his mother's menstrual period came", which could not be asked for help. Lu Guijun and Li Zhigang would come to the ward every day to visit Lin Ping. At the moment when she was not unconscious, as if she had sensed her own death, Lin Ping told the doctor and her family that she did not want to be buried in her hometown in Hebei after she left. She hopes to be buried with her parents and buried in Beijing, so that her family can often come to see her. In August 2021, accompanied by the whole family, Lin Ping's heart monitor tended to flatten out. After helping his mother wipe his body, change clothes, block his mouth and nose, and do everything well, Zhang Jingyi finally cried bitterly. Mom's remains looked warm and calm, and a few days before his death, doctor Li Zhigang used a nebulizer to help his mother wet her lips.
Until now, Zhang Jingyi often remembered what Lu Guijun had said. He said that at the end of his life, if the deceased dies without pain, with dignity and peace, all the wishes of the family are expressed, and the friends around him feel safe and smooth, the deceased will not feel fear. "Mom is satisfied with all three of these things, and she walks smoothly." Zhang Jingyi told himself. He no longer feared death, and Mom took off that painful old coat, and she would wait for him in another world.
Lu Guijun exchanged care with hospice patients and nursing staff in the ward. Courtesy of respondents
Ferryman
When he joined the workforce 30 years ago, Lu Guijun's main profession was a pain specialist. Saving lives and helping the injured is the duty of medical staff, and as long as there is a glimmer of life, we must go all out. However, when there is no glimmer of life and there is really no cure, what can doctors do?
Lu Guijun's confused questions were answered in listening to the patient's heart. After not only emphasizing the solution of the disease, but after entering the fear and anxiety of the patient's heart, Lu Guijun gradually found that for patients who are on the verge of death, the first thought is "what is the process of death", the second is "I can die, but do not die in pain", the third is "I can die, but I must die with dignity", and the fourth is "I can die, but do not die alone".
How to expand the thickness of life without extending the length of life, so that patients can complete the last journey of life with quality and dignity, Lu Guijun took this as the goal and began to engage in palliative care work.
In the hospice ward, where the mortality rate is 100%, Lu Guijun met and said goodbye to every patient. He will not suffer because of this, and the real "death" is forgotten by the living, because the memories related to the deceased are preserved, and they have not completely left. After the patient's death, he never said words such as "all the way good" and "there is no pain in heaven", but said as lightly as if sending an old friend on a long trip, "see you next time" and "rest well".
Talking about his own concept of life and death, Lu Guijun said, "Everyone is born to death, and when facing the problem of death, from the end of life to death, there are always many regrets of reluctance, pessimism, embarrassment, and incompleteness. But if you stand on the side of death and look at life, there is infinite space. ”
Doctor Li Zhigang also felt the meaning of being a medical worker from the hospice care for patients. Li Zhigang has been practicing for 12 years and was previously a doctor in the pain department of a cancer hospital. In addition to managing the patient's pain symptoms, in the hospice practice, he spends more time listening to the patient, participating in the patient's disease experience, and also beginning to enter the patient's family and life. "It is no longer just an intersection with the patient, but a true witness to the journey of life from abundance to hardship, and then grow in difficulty and say goodbye." Unlike saving a life, this sense of accomplishment comes from being able to give away a life and having a lasting impact on the patient and the family. Li Zhigang said.
Because of witnessing the loss of so many lives, palliative care practitioners cannot avoid grief. Lu Guijun's team will carry out a "Milk Tea Of Life Moment" every Thursday, and in the milk tea shop downstairs of the hospital, doctors, nurses, medical social workers and clinical pharmacists will gather to share the difficulties, questions, experiences and insights they have encountered in their work, and support each other in sharing.
The "Milk Tea of Life Moment" of the hospice group. Courtesy of respondents
In recent years, the National Health Commission has successively carried out two batches of hospice care pilot work, including Haidian District of Beijing, Changchun City of Jilin Province, Putuo District of Shanghai Municipality, Luoyang City of Henan Province, and Deyang City of Sichuan Province. By the end of 2020, Shanghai has realized that all community health service centers provide ward or home palliative care services, and continue to extend to comprehensive hospitals, specialized hospitals, nursing homes, social medical institutions, etc., forming a diversified supply of palliative care services with different characteristics of institutions at different levels. China's palliative care industry has made useful progress in policy layout and grassroots practice.
However, about 10 million people die each year in China, and only 0.3% have access to palliative care services. In the face of more than 3 million new cancer patients every year, the supply and demand of hospice care institutions in China are still very different. Influenced by traditional ideas and culture, people still shy away from talking about death, and the lack of life education has deprived hospice care of the soil to rely on.
On the other hand, even in a demonstration unit like Tsinghua Chang Gung Hospital, the hospice team is facing obstacles. The hospital has a total of 15 beds, all of which are single rooms, including 7 special-purpose beds and 8 reimbursable medicare beds. Only 4 of the 8 Medicare beds provide long-term accommodation, and the other 4 are used to treat day patients. In addition to the small number of beds, the turnover rate is low, because the mortality rate of the hospice ward is 100%, which is considered to be a "bad department" in the traditional evaluation system, and faces great pressure on the evaluation of the department. In addition, the traditional medical insurance charging program does not match the treatment model of hospice care, which also affects the enthusiasm of medical staff.
Even though there is still a long way to go, the members of the Chang Gung Hospice team are still on the move. Lu Guijun concluded, "Palliative care is that I shake the bridge out to sea under the afterglow, cast the last net for life, and let this life return as full as possible." ”
Li Zhigang often said that he provided "the most insignificant help" in hospice care, but for the families of helpless and desperate patients, this help gave them the strength to go on. Several times, at the moment when the patient's heartbeat stopped, Li Zhigang felt that his heartbeat was also accelerating, he felt wonderful, and then suddenly realized: This may be a spiritual connection.
(In the text, Lu Qiong, Lu Hengyuan, Lin Ping, Zhang Jingyi are pseudonyms)
Beijing News reporter Yang Liu intern Lei Xinfa editor Hu Jie proofreader Li Lijun