Last days of comfort
Palliative care for terminally ill children on rise in China
Lyn Gould spent just one day with Alexa, a 10-week-old girl who had been abandoned by her parents after an operation, but she will not forget the toddler, whodied late last year.
“Her tiny body was fragile and encumbered with drains and post-operative wounds,” said Gould, co-founder of the Butterfly Children’s Hospices, an NGO that runs the ButterflyHome in Changsha, Hunan province, in an email exchange with China Daily. The hospice is the first in the country devoted solely to children with terminal illnesses.
“For some of our new staff, Alexa was the smallest baby they had ever seen. At first, our carers— ayi as we call them in Chinese — were afraid their hands would bruise or break this tiny hummingbird of a girl,” Gould said.
“Yet with quiet resolve, our staff put their fears aside — to see Alexa’s ayi holding her close and singing was incredibly beautiful. Her time was close and she had experienced only hurt in her life so far. But for the brief time she was with us, she knew only love,” said the 67-year-old, who set up the Butterfly Home in 2010, after working as a pediatric nurse in the United Kingdom for nearly 40 years.
Fu Xiaoli, the home’s director, said love is at the heart of palliative care, a term that is becoming increasingly common in the Chinese medical world. “Palliative care is specialized, all-around care for people with severe, often terminal, illnesses. Rather than providing active treatment aimed at a cure, palliative care focuses on the relief of symptoms and offering mental, emotional and social support for patients and their families. Quality of life and a comfortable and peaceful end of life is what we have in mind,” she said.
To provide a sick, abandoned child with a sense of peace is a daunting task, and the absence of a loving family is just one of many undermining factors.
Zhou Xuan, an oncologist at the Beijing Children’s Hospital, clearly remembers seeing a dying boy pressing his face against the window beside his bed. “He was about 2, and had acute myeloid leukemia. For most of the four months he stayed on the ward, he longed to go outside and play, a request repeatedly turned down by his mother who was worried about his physical condition,” she said.
“Weeks later, I came across the boy’s mother at the hospital. She was traumatized by his death, and by the fact that she had refused his ‘one last wish’,” Zhou said. “Sadly, regrets are common among parents, who are focused too single-mindedly on seeking a cure for their dying child.”
She said the success of children’s palliative care in China will depend on whether parents can accept that the process is not about “giving up”, but about “making peace with oneself while having a dignified, less-painful exit from life’s stage. In the West, this is done by specially trained teams of doctors, nurses and social workers who work together with a patient’s doctors to weave an extra layer of support for the patients and their families. In China now, my team of doctors and nurses have to undertake dual roles.”
Strangely, this arrangement may better suit the current situation: Chinese parents are generally skeptical about the notion of palliative care, and consequentlymay need advice from people they trust, such as medical staffwhotreated their child.
“We advocate an integrated approach, whereby palliative care is offered to patients at a relatively early stage, along with curative treatment,” Zhou said. “Later, as the illness progresses, we gradually raise the level of palliative care while reducing the role of active treatment.”
In reality, breakthroughs often come at unlikely — sometimes painful — moments; for example when active intervention has failed or wreaked considerable damage on the child. “When parents feel vulnerable, they tend to be more open to ideas that they might otherwise immediately dismiss,” said Wang Xumei, a veteran pediatric nurse in Zhou’s department. “Symptom control and making terminally ill patients feel as comfortable as possible is embodied in the definition of palliative care. A lot of trust and understanding is gained when we lift children out of physical suffering with morphinemedication,” she said.
Suspicion and fear
Morphine is a sensitive word in contemporary Chinese culture. It is strongly associated with addiction and therefore arouses suspicion and fear.
“It’s no exaggeration to say that in past decades the prejudice the Chinese medical world has long held against morphine has resulted in a tremendous amount of pain for patients. That pain that could have been tamed by the wellguided administration of drugs,” Zhou said.
She believes that children, especially very young children, bear the brunt of this prejudice. “Despite a common misconception, children actually have a much higher tolerance of physical pain and complain much less than adults. That’s partly because they are more easily distracted and therefore less focused on their suffering.
“It’s not unusual to see a child fall asleep after crying out in pain for some time,” she said. “This has led many to believe that the child isn’t suffering ‘that much’ or that the pain is relatively short-lived. In fact, neither is true,” she said.
According to Zhou, before the end of 2014, morphine was only available via injection at the Beijing Children’s Hospital, one of the best of its kind in China. “At my insistence, in early 2014, our hospital introduced morphine pills. That was a huge step forward since it allowed morphine to be used by outpatients athomeas a prescription drug,” she said. “If you listen to the World Health Organization, there’s no better place to have a peaceful death than at home.”
Sun Yang, a volunteer with Zhou’s team, has firsthand experience of that: “I once drove a 13-year-old girl and her family to the railway station. The girl had terminal blood cancer, and had entered the countdown of her life. She had been very cooperative and very quiet during her stay at the hospital. But on that homecoming day, I could see that excitement had tinted her cheeks.”
But not every child has a home to return to. That’s why Gould, who has been interested in China since childhood, opened the Butterfly Home, where the team tries to imbue vitality in children with “no life in their eyes” when they arrive “shocked and devastated” after being abandoned.
This is despite the fact that the majority of the children will die, Fu, the director said. “Most of them have multiple illnesses and complications with no medical solutions. Over the past six yearswehave cared for more than 176 babies and children — sadly, more than half of them had conditions where they could not have a long life” she said. “Death doesn’t diminish the meaning of what we do — it increases it.”
The carers’ daily routine involves feeding, massaging and a lot of hugging and playkissing. The carer-to-child ratio is kept at 1-to-3 at all times to make sure that each child — there are currently 15 in the home — enjoys enough love and attention to develop the kind of emotional bond essential to their well-being. Meanwhile, the hospice’s four trained pediatric nurses are always ready to react to changes in a child’s condition. “No two days are the same at Butterfly,” Gould said.
Gould believes the home’s success is underpinned by an understanding and respect of local culture, and a willingness to be patient before real change starts to take place. “At first, even our Chinese nannies who loved the children would refuse to be near a dying child. But slowly, as they came to recognize the child as a real person and love them, they began to want to be with them in their last hours, holding them, singing to them and grieving for them when they had gone,” she said.
She is nonjudgmental when it comes to the issue of abandonment: “I have seen so many children who were obviously loved by their families and were abandoned simply because the family could not get the care and support needed to keep them, make them comfortable and cope with their deaths.”
Zhou, from the Beijing Children’s Hospital, has experience of the ordeals that dying children and their families go through.
“A few years ago, after the death of a 10-year-old girl at midnight, her mother, despite her suffocating grief, bowed deeply to everyone of us, thanking us for allowing her to stay until the last minute,” she said. “People are so afraid of being ‘driven’ from hospitals because no support— medical or emotional — is available once they are outside.”
Since 2014, Zhou’s team has tried to fill the void by making follow-up phone calls to patients, many of whom are approaching death and have been “persuaded” to leave hospitals because active treatment is no longer meaningful.
“We try to listen to them and offer advice on pain control — we give patients morphine pills and advice before they leave the hospital,” Zhou said. “The most-asked question is: Will my child die a horrible death?”
In March last year, Zhou used money donated by the public and businesses to rent a 100-square-meter space a few minutes’ walk from the Children’sHospital. There the children can read and play with volunteers while their parents take a yoga class or a counseling session with professional psychologists. “Children are little sponges capable of absorbing any mood from those around them, including anxiety and despair. If we are genuinely concerned about the children, we have to take care of their parents.”
Zhouhas helped to establish the Chinese Children’s Palliative Care Work Group, comprising like-minded medical professionals from 31 public hospitals in China. “Apart from sharing experiences, I can also refer some of my terminally ill patients to hospitals within our work group located in smaller cities. They are not as crowded as ours and can offer a more relaxed environment for palliative care.”
A heavy toll
Last winter, the father of a 13-year-old who had been receiving treatment for four years in Zhou’s department asked her to talk with the dying boy. “He had a serious relapse after a stem cell transplant. Both the doctors and the parents knew it was the end,” she said. “But the boy was adamant about surviving. In fact, his refusal to reconcile with reality and his insistence on continuing treatment at all costs— financial, physical and mental — ravaged those who loved him.
“The boy was quite sensitive – so sensitive that he must have guessedwhyI had turned up in his little room. The first thing he said was: ‘ Nothing is worse than giving up hope’. I didn’t blame him. I believe that a patient’s wishes should always be respected, but I also realize that a lack of proper education about death has exerted a heavy toll.”
KatieHill, head nurse at the Butterfly Home, found solace in the last hours she spent with Sophie, a 10-month-old girl who had “a large, aggressive cancer that caused her face to swell”.
“One weekend, she spent her nights not in her crib, but snuggled in bed withmein the treatment room,” Hill said.
“On her final morning, she woke early after a comfortable night. We cuddled in bed while waiting for the rest of thehouse to stir. We listened to music, and Sophie gazed steadily into my eyes. She was alert, calm and unafraid,” said Hill, who has a bachelor’s degree in Children’s and General Nursing. “Somehow Sophie understood that her suffering was almost over. That quiet morning was a sacred goodbye before she went.”
The girl died an hour later, butHill has no doubts that she’s “still shining”. “Throughout Sophie’s short life, her light never grew dull in spite of everything she suffered,” she said. “We are blessed by that light.”
Sadly, regrets are common among parents, who are focused too singlemindedly on seeking a cure for their dying child.”
Sophie, a cancer patient who died last year, with a pediatric nurse at the Butterfly Home.
Zhou Xuan, an oncologist at the Beijing Children’s Hospital