In a healthcare environment unfavorable to hospice programs, few practitioners are venturing into this industry, and even fewer are offering services aimed at terminally ill children
A staff member cares for a child in Butterfly Children’s Hospices, a palliative care center founded by a British couple, Changsha, Hunan Province/ Photo by IC
When Xiao An (pseudonym), a young boy from Shandong Province who suffered from leukemia, came to the end of his life, he thanked his parents three times for giving
him life and treatment before removing his own oxygen tube.
Xiao An spent his last days at Beijing Children’s Hospital under the care of Dr Zhou Xuan, who has led the hospital’s palliative care team since she launched the service a few years ago. As the deputy director of the hematology department, Zhou began to extend
her reach in October 2013 to palliative care – long-term care that focuses on alleviating the pain of serious illness. This kind of treatment is often multifaceted and includes not only medical care but also psychological and social services.
In China, palliative care and its sister service, hospice care (generally provided to patients with six months or less to live), are nascent industries. Certain aspects of the healthcare system make it difficult to get this branch of medicine off the ground. Public hospitals, largely seen as the country’s best, are evaluated by both their cure rates and death rates, so programs catering to those with severe and sometimes incurable diseases are viewed by many institutions as unworkable. Some medical centers even try to persuade terminally ill patients to return home just to maintain good numbers.
Private hospitals are trying to push into this sector, however. There is a small but growing number of palliative or hospice care programs in first- and second-tier cities like Beijing and Tianjin. However, Zhou’s is one of the few that exclusively helps children. She wanted to give families without hope a place to turn.
Dr Zhou Xuan leads Beijing Children’s Hospital’s palliative care team / Photo by CNS
Need
Zhou’s path to palliative care began with a seven-year-old girl. She was a patient at the children’s hospital whose lymphoma kept coming back after rounds of treatment. One night, Zhou could see that she had lost all of her strength. The girl’s doctors gave her medication to alleviate her pain and make her as comfortable as possible. After she died, her mother physically bowed to all of the doctors and nurses on duty to show gratitude for allowing her daughter to stay in the hospital until her death.
“She knew that if her daughter were to leave our hospital, no one else would take her in,” Zhou said, implying that some institutions would be too worried about their death rates. When she saw the mother’s gratitude, Zhou knew that she wanted to open a palliative care center just for children in the future.
In 2013, Zhou traveled to the US for further studies. There, she saw examples of palliative care facilities and was inspired by the services tailored to children. When she returned to Beijing, she began training her staff in this medical subspecialty. They started accepting palliative care patients in Zhou’s hematology department in October of that year.
Less than a year later, Zhou was working to expand services once again. On August 6, 2014, she and her team successfully secured a partnership with a charity organization so they could start to raise funds to establish a pediatric palliative care facility away from the stress of the hospital. With donations from several businesses and the alumni of the elementary school affiliated with Tsinghua University, Zhou’s team set up a new activity center for their palliative care patients in March 2015. The center is in a suite of rooms at a Holiday Inn located about 1.5 kilometers away from Beijing Children’s Hospital.
Upon entering the center, three rows of pastel, child-sized desks and chairs greet you,
with a pile of children’s toys and books at their side. On the left is a large exercise room equipped with a treadmill and other equipment, computers, stereos and a projector. All of the electronics and equipment are donated. On the right is a small classroom that doubles as a makeshift meeting room and lecture hall. The activity center is staffed by volunteers and open year-round, with the exception of Chinese New Year. Zhou said that she wanted sick children and their parents to have a safe place to rest and play outside of the hospital.
Lyn Gould, who co-founded Butterfly Children’s Hospices in Changsha, Hunan Province, says what pediatric palliative care patients need most is “love and care” / Photo by IC
Care
Wang Xumei has been working as a nurse in Zhou’s hematology department for eight
years. She joined the palliative care effort in 2013. One of her duties is to regularly call the parents of patients who have recently left the hospital. She has a folder on her cell phone with information about every child in her care.
Wang said that before she dials each number, she mentally prepares herself for what could happen during the call. Parents usually use this time to ask Wang questions about issues
like their child’s racing heart rate or loss of appetite, but sometimes she learns that the child has died. “Sometimes I think, ‘Could a miracle happen? Could they go home and just get better?’” She told our reporter. “But then I realize that’s not the case; sooner or later, they all have to go.” A main aspect of Wang’s job is to offer end-of-life solace and care to these children and their families.
Feng Guilan, a nurse in Changsha, Hunan Province, does the same thing for orphaned
and abandoned children with life-threatening diseases at Butterfly Children’s Hospices, a charity founded by a British couple. Feng spent some of her Chinese New Year holiday holding a two-year-old boy nicknamed Zhongzhong (pseudonym) who had severe cerebral palsy and was unable to walk or speak. He had been coughing constantly and excess mucus was making it hard for him to breathe. Although she used a suction machine to help clear the phlegm, Zhongzhong had already become quite pale and his breathing grew more ragged, Feng recalled. He died around 10 PM that night. Feng washed his body, dressed him in fresh clothes and wrapped him in a cloth dotted with butterflies before funeral home staff came to take his body away.
As of July, Butterfly has cared for 170 children, more than half of whom have passed away. The children who come to Butterfly all have serious health issues and no parents to care for them; for some, doctors have estimated they have six months or less to live. When people ask Butterfly co-founder Lyn Gould what these children need most, Gould replies: “Love and care.” Children with the most severe health issues receive one-on-one service from nurses at Butterfly. Sometimes the children die just a day or two after arrival; the longest a child has stayed at Butterfly is five years.
When our reporter visited Butterfly on June 7, there were nine children living at the center. Eight others had recently been sent to hospitals in other cities for further treatment. If they are able to recover, they are often sent on to orphanages, but some are adopted. As of July, 17 children have been adopted by families in the United States and Australia and 11 more children are ready for adoption.
Challenges
Constantly being around the death of children takes an emotional toll on all involved. Wang Xumei told our reporter that not all parents express appreciation for the palliative services they receive, but she keeps calling them nonetheless. She once called a mother who said calmly: “I know my child is not well. There may only be a few days left.”
Wang assumed the mother had already prepared herself for the worst, but several days later, when Wang called again, she wept for a solid 20 minutes without saying a word, crying over the death of her child. Wang said she realized in that moment how important
and meaningful pediatric palliative care could be. Many parents have no emotional outlet without professional help, so they are forced to hold in their pain for a long time, she said.
Zhou Xuan does her best to help parents steel themselves in the face of tragedy. “I tell them that their child’s ailment is incurable, so at this point, what is most important for the child? It is dignity. If the terminal point is already there, would you rather choose a complicated, winding path to the end, or choose a painless path, even if it’s a little shorter?”
When children leave the hospital to spend their final days at home, Zhou gives them prescriptions for pain management and, if available, medication that will stave off their condition for a little while, just to give parents more time to accept their child’s death.
“It is very important for parents to not feel regretful,” she told NewsChina. Otherwise, parents might deal with depression their entire lives.”
Since they started the program three years ago, Zhou’s team has provided palliative
care to more than 80 children, 90 percent of whom have died quietly at home. While
these children are around death all of the time, many still do not understand it. In
Chinese culture, talking about death is often viewed as taboo. Even when parents try to speak to their kids about it, Zhou said, sometimes their kids refuse to listen. But Zhou said she believes society needs to be open to talking about death. “Only when we stop thinking that death is scary or terrifying and we have the right perspective on death can we truly accept palliative care,” Zhou said.
People of all ages who suffer from painful terminal illnesses deserve services like
palliative care, the main goal of which is to improve their quality of life and make their death as comfortable as possible. Palliative care pioneers in China like Zhou and Butterfly’s Gould say they want to spread palliative care culture around the country so that more people in need can access these services.
Gould is already doing so. In November 2013, the second Butterfly center was established in Nanjing, Jiangsu Province. Butterfly’s Changsha facilities began to offer training to hospital staff in late 2015. And this year, Gould became a member of the international board of trustees of the International Children’s Palliative Care Network. It is the first time the organization has had a representative from China.
“Every child deserves a chance to be known and to be loved,” Gould told News-
China. “Our doors are the ones that are open when every other has been shut. That’s exactly what we give.”