This article was written by yxtlavi
“Go over there and make more friends.” Silent Dad whispered in his ear. Accompanied by his family, doctors, and nurses, the 7-year-old silently closed his eyes and went to “another planet”.
The grandfather, the doctor in the previous department, told himself that his parents would come to the new planet to find him later. Fang Yongjun, director of the Hematology and Oncology Department of Nanjing Children’s Hospital, who has been taking care of him, said that he was not afraid before leaving silently, but it was a pity that he could not see the baby in his mother’s womb.
Because of three years of neuroblastoma, one year of recurrence, and ineffective treatment, I moved here silently two weeks ago. In this room of about 40 square meters and the main color of maple leaf yellow, there is a single bed, a double bed, an activity corner full of toys, and a simple kitchen, It seems to meet the needs of the Momo family. The warm apartment is actually the palliative care ward of the Department of Hematology and Oncology, Nanjing Children’s Hospital.
Inside the hospice ward Source: Photographed by the author
As of August 2020, 34 dying children have been accompanied in this palliative care unit dedicated to terminally ill children.
Two years later, Fang Yongjun, who was established under pressure and bluntly said “I dare not do anything”, is finally able to relax and accompany the children on the final journey. He said, “It’s the advancement of the whole discipline.”
Secret Ward, 15th Floor, Children’s Hospital
The first time I wanted to be a hospice at our hospital was around 2017.
As the chief physician of the Department of Hematology and Oncology in Nanjing Children’s Hospital, Fang Yongjun sees countless children in the hospital every year, and most of them can receive effective treatment. In the eyes of patients, Director Fang is highly efficient and productive, and will not be sloppy in terms of sensibility. He holds two mobile phones at any time to handle official information; when parents call him to ask about treatment plans, he just answers seriously: “Tell you two principles, one is your voluntary choice, and the other is beneficial to the patient. Let’s talk about other outpatient clinics. .”
Fang Yongjun said that the diagnosis and treatment level of the Department of Hematology and Oncology in Nanjing Children’s Hospital has reached the domestic first-line level, and the medical and nursing team will learn to try new targeted drugs and new therapies, “Everyone is a very hardworking doctor. “. Today, the level of medical care has already subverted the traditional concept, and “you will surely die if you get leukemia” no longer exists. According to the Progress Report on Children’s Hematology Cancer Research, more than 80% of sick children can survive long-term disease-free.
Fang Yongjun is looking at the data Source: Photographed by the author
However, about 20% of children still fall into the medical vacuum. These children had to go home, but the family could not relieve the pain or oxygen for him, and the children died in pain.
Fu Jinyu, an attending physician in the Department of Hematology and Oncology, remembers the first patient she took over: a 12-year-old boy with neuroblastoma who returned home for convalescence in terminal stage. The child cannot lie down because of the pain, and can only curl up all the time. The children’s hospital does not have the conditions for tranquility, and the parents can only go to the adult hospital to prescribe analgesics for the child. “This child is very good, always telling grandma ‘grandma eat more of what she wants to eat’.” Looking back, Fu Jinyu still has mood swings.
“I wish you good health and happiness” is written outside the general ward of the Department of Hematology and Oncology Source: Photographed by the author
In 2017, Fang Yongjun met parents who volunteered to be admitted to the hospice ward.
6-year-old Lin Lin suffered from a brain tumor. He traveled to Beijing and Shanghai with his parents for treatment, but returned to Nanjing because there was no treatment. Lin Lin vomited and had pain. His parents found Fang Yongjun and hoped that Fang Yongjun could help the child find a hospital, which would at least relieve the pain.
Fang Yongjun introduced a secondary hospital in Nanjing, but the hospital had no experience in managing terminally ill children. According to the parents, Lin Lin passed away. Since then, the idea of ”building a hospice ward in the hospital” lingered in Fang Yongjun’s mind. Fang Yongjun vaguely felt that if it was built, it might be more than just “pain relief”, and it might be a step forward in the discipline.
In 2019, Fang Yongjun met Huang Fang, director of the Rainbow Intensive Care Center for Children with a similar idea, at a seminar, and the two hit it off: the special fund of the Rainbow Benefit Foundation is responsible for the renovation. In the ward, the Rainbow Center sends professional nurses and social workers to take care of the patients, while the team of doctors is in charge of Nanjing Children’s Hospital.
Rainbow Center also opened a children’s soothing activity corner here for children in the Department of Hematology and Oncology to play Source: Photographed by the author
In a similar large-scale tertiary hospital, countless patients come to see a doctor and be hospitalized every day, but the medical resources are extremely limited, not to mention that it is hopeless to use the doctor’s “spare time” for treatment of terminally ill patients. In the eyes of some people, this kind of “treatment” is actually a negative treatment and a waste of resources.
However, sometimes “active” and “negative” treatments may not be distinguished by clear lines. Fang Yongjun once said, “No matter how old everyone is when they die, from the perspective of the universe, a lifetime is just an instant.” The so-called healing is actually just a proper extension of life. so that children can have a better quality of life.
At that time, children’s hospice care centers such as “Daisy House” and “Butterfly House” had already appeared in China, but most of them were led by doctors and funded by the private sector, and eventually wards were established outside the hospital. Fang Yongjun thought that if it can be established in the hospital, doctors can control the patient’s situation at any time, and it will be more convenient for multidisciplinary consultation.
There are very few hospice wards built in public hospitals, and only one National Children’s Specialist Hospital has them at the time. Fortunately, when the department proposed it, it was supported by the leaders of the hospital; and a new ward was opened in the Hexi District, and the ward in the Guangzhou Road District was just free, and the ward problem was solved. There are two wards, one is converted from a normal double ward, 40 yuan per day after medical insurance reimbursement, and the other is a single room designed with maple leaf yellow as the main color, including a single bed and a double bed, which can accommodate a family of three , 120 yuan/day after medical insurance reimbursement.
Inside the hospice ward Source: Photographed by the author
The existence of a hospice is a secret in the presence of a child who is actively treating. After referring to a large children’s specialized hospital (the general ward of the hospital is located on the 4th to 5th floors, and the hospice ward is located at the end of the 1st floor, the two do not disturb each other), Fang Yongjun firmly believes that “patients are Using different treatment methods, taking into account the psychology of the patient’s family, it is absolutely impossible to know each other.”
The general ward of the Department of Hematology and Oncology is located on the 10th floor. The hospital moved palliative care to the 15th floor, next to the day ward. Occasionally, children on the 10th floor come to play in the activity corner on the 15th floor, and the doctor will place the isolation tape in the corridor of the tranquil ward to prevent parents from approaching.
When the activity corner is open, the doctor will place the isolation tape in the corridor to prevent other patients and parents from approaching. Source: Author photo
“For example, the recently admitted 2-year-old child, although he has been treated in our hospital, the parents actually learned about the Anning Ward from the Internet, and then took the initiative to mention it to us.” Fu Jinyu said .
August 2020, first child moved in. The multi-department team of anesthesiology, pain, and nutrition led by the Department of Hematology and Oncology was officially launched. Later, a new technology of patient-controlled subcutaneous analgesia (PSCA) was developed. The infusion every two hours can make the child very relieved.
All doctors from the Department of Hematology and Oncology also signed up. Chief physician Huang Jie, deputy chief physician Wang Yun and other doctors, in collaboration with head nurse Dai Qian and others, are jointly responsible for the treatment of children in the Anning Ward. and soothing.
Huang Jie is mainly responsible for nutritional support, Wang Yun is responsible for pain relief, and Dai Qian focuses on family care of children. Speaking of which, Fang Yongjun, who has always paid attention to principles and rules, was also a little moved, “Everyone uses their spare time to do it.”
Main members of the medical and nursing team in Anning Ward Front row: Fang Yongjun Back row from left: Head nurse Dai Qian, deputy chief physician Wang Yun, chief physician Huang Jie Source: Department of Hematology and Oncology
When An Ning Meets “Informed, Consent, Choice”
It’s a lot harder to get up and running than to set up. Before setting up the ward, Fang Yongjun observed foreign children’s palliative care centers and read a lot of materials, but in fact found that it was not the case.
Palliative care, as defined by the journal Cancer, is the enhanced, targeted management of patients with terminal illness, designed to meet their psychological and spiritual needs, with the aim of improving their lives quality. The scope of “targeted management” is quite large. Children in the terminal stages of the disease may have multiple tumors, such as a tumor in the neck pressing on the windpipe. Without chemotherapy, the purpose of soothing cannot be achieved, but if chemotherapy is continued, it seems to be too aggressive and goes against the principle of tranquility.
Recalling the first five patients, “we didn’t dare to use our slightly more aggressive treatments at the time.” Fang Yongjun has been consulting with the director of the pain department of an adult hospital with experience in palliative care. He often asks, “What should I do with this patient?” He also invited them to participate in the MDT discussion of the first five patients.
Discussion of MDT for palliative care patients Source: Author photo
The hematology team decided to make their own SOP (Standard Operating Procedure). After admitting ten patients, they started from “communication and transfer” to the end of “death announcement”, and settled down a complete SOP. Now Fang Yongjun seems much more relaxed, “if necessary palliative chemotherapy can be done, and even surgery can be considered.”
In addition to the dilemma of medical decision-making, another initial difficulty was communication.
Communication of palliative care begins with the consultation.
The office sandwiched between the two palliative care wards is the conversation room where the child is transferred before palliative care. Whenever doctors talk to patients’ families, the spacious office is bustling with the children’s grandparents, grandparents, and other relatives.
Conversation tables and chairs Source: Photographed by the author
The consultation process includes routine purely medical-related content such as the patient’s onset process, diagnosis and treatment process, place of consultation or hospital. Almost all parents took their children to well-known hospitals in Beijing, Shanghai and Guangzhou and tried different treatments, especially “the best medical treatment in their minds”. At this time, parents will show panic and worry.
After discussion, the hematology team wrote two principles in the SOP. “One, consider whether there is no other way to implement it?”
The definition of “no way” means that all the methods of the first, second, third and fourth lines have been used. The red, enlarged font in the SOP reads: “If you don’t find room and room for further diagnosis and treatment, don’t be wise to give any hope of healing and recovery that you can’t give; if you think there is still, you should not enter tranquility. procedures.”
The second principle is “Informed, Consent, and Choice.”
The parent sources of the conversation are mainly divided into three types: parents themselves come to find out after discovering it online; introductions from other doctors in the department; and Fang Yongjun’s own patients. In addition to the first type of conversation (which also accounts for the largest proportion), the remaining two types of parents are not very clear about what tranquility is, and need to be introduced in detail.
Palliative care two wards and interview office Source: Photographed by the author
Fang Yongjun said, “I will never induce them, but provide parents with one more treatment method.” After listening to his remarks, some parents agreed, some refused, and some said ” Think again.” The child left in the meantime. Fang Yongjun doesn’t see this as a pity, it’s still part of “informed, consented, and chosen.” In the early days of its establishment, there have also been cases of “failure” due to poor communication.
A 10-year-old child with an incurable neuroblastoma glioma quickly fell into a coma when he entered the ward. Out of the principle of tranquility, there is no rescue equipment in the ward, but the parents are reluctant to let go and insist on transferring the child to the PICU for rescue. Fang Yongjun said, “Maybe they thought they had figured it out when they first communicated, but they didn’t.” The child only lasted for two more days in the PICU before leaving.
“However, we still respect the parent’s idea and can leave. This is also his ‘choice’,” Fang Yongjun said.
Comfort children with fairy tales
Also to comfort young parents
In addition to parents, communication with children is also important. “Children who come to the hospice ward are all very attached to life. They may not know what death is, but they clearly “want to live”. The hospice wants to make these children feel more comfortable and less pain. Some have walked the last leg of their lives,” Fu Jinyu said.
12- and 13-year-olds sometimes search the Internet for “hospice care” after moving in. They will know the situation in their hearts, and usually do not take the initiative to bring it up; There is no concept. Children in the middle age group have a dim perception of death. They will seek information from the outside world and ask their parents, “Why are we moving here?”, but the parents are speechless.
In theory, death education can be given to children over the age of 8, but there is often a tacit silence for four weeks. With the consent of the parents, sometimes Fang Yongjun will also chat with the children. “Some children like science fiction, so I will give the example of the universe.”
The toy corner of the hospice ward Source: Photographed by the author
“We live in three-dimensional time, but there can’t be only one solar system in the universe. Like Proxima Centauri, the closest star to us, you might get there early.” He said,
strong>”Your parents will go there in the future, and you will meet again on another planet.
Fang Yongjun told Momo who likes “The Little Prince” these words. Momo was very thin when he was first transferred to the ward, but after using PSCA, he felt better and had a little appetite. The doctors and nurses massaged Momo, and Grandma Momo also learned the technique and gave him body massage and stretching every day. Silently tell my grandma, “I don’t have the pain anymore.”
In the activity corner, this is Momo’s favorite toy Source: Photographed by the author
Fang Yongjun also uses different communication methods for different children. “Some children may be more receptive to a visual metaphor. I will move two chairs to demonstrate to him.” He lined up the two chairs in the same direction. He let the child sit on the front chair and the parents sat in the back. , “You may not be able to see your mom and dad, but your mom and dad are right behind you, watching you all the time.”
Sometimes doctors use white lies to soothe a child with a strong desire to survive. After suffering from a brain tumor for 3 years and having relapsed twice, Jiaojiao was admitted to the Anning ward. Her parents told Fang Yongjun that the child had an impression of “the medicine for hair loss, and thought that it would be better if she took it.”
Jiaojiao on the hospital bed could not speak, but her eyes were telling Fang Yongjun that she wanted to live. When Fang Yongjun injected her with saline, he comforted her and said, “This is the medicine for hair loss.” Jiaojiao died after a two-week plateau.
Words written by the parent of the first child admitted to the hospice unit on the guest book Source: Department of Hematology and Oncology
The hematology-oncology team is also constantly thinking about the difference in child palliative care. They believe that compared with children, adults may be old, and the people who take care of them are no longer young and need more physical assistance. At the same time, adults may also have a variety of complications that require symptomatic treatment.
However, children need more psychological support, and comforting children is actually comforting their parents. “From this perspective, child palliative care is more important, because children are the spiritual pillar of a family. The parents of the children are still young and need to continue to live,” Fang Yongjun said. Seeing a child feel more comfortable in his last days is also healing his parents.
The medical team of the Department of Hematology and Oncology rounds the ward. Source: Department of Hematology and Oncology
“The children who come to the Department of Hematology and Oncology are very well behaved. In other departments, children may cry when they get needles and need several people to hold them down, but our children are very good at bone piercing. Don’t say a word.” Fu Jinyu said that the child with tumor has been suffering beyond normal pain for a long time, so she is extraordinarily well-behaved, which makes her very distressed. The limitations of medicine make doctors helpless, and tranquility is their choice after exhaustion.
“It is said that doctors often comfort, but sometimes they can only comfort.” Fang Yongjun said. However, doctors are making a difference, and palliative care, coordinated by a medical team, is continuing to explore how best to help these children.
Patients mentioned in this article are pseudonyms
Planning: yxtlavi
Producer: gyouza
The source of the title image: photographed by the author
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