Palliative care helps kids die with dignity
Afluffy toy bear on the pink sofa, a cozy bed bathed in soft lighting, a well-furnished kitchen and a refrigerator stuffed with food ... virtually nothing in the toy-filled room indicates it is actually a ward.
Established in 2017, Daisy House is located in east Beijing. The family-style hospice provides palliative care to terminally or critically ill children and meets their physical, mental and spiritual needs, aiming to help them die with more comfort and dignity.
Duoduo (pseudonym), a girl with terminal cancer, moved to Daisy House in February, where she was prescribed analgesics by doctors to reduce pain and her family received psychological support from counselors.
For many children like Duoduo, death will most likely happen amid the fluorescence and thrumming machinery of an intensive-care unit. But her parents had chosen the hospice and tried to make the short time she was left with in this world as good as it could be.
On a peaceful day in March, Duoduo passed away.
“She died without much pain,” her grandma said.
Zhou Xuan, founder of Daisy House and a doctor with Beijing Children’s Hospital, said: “Even with incurable diseases, children can leave the world with more comfort and dignity.”
So far, a total of 44 terminally ill children have died in Daisy House, and all the treatment was paid for by a charity.
Parents normally choose to bring their child home when they know treatment cannot be continued. Without professional care or medical support, both parents and children live in fear and pain for the remaining time.
Palliative care, which originated in the West, focuses on all-round care for patients and their families, including pain relief, psychological counseling and social support.
“Children need comprehensive palliative treatment more than adults. They cannot express themselves, and their psychological development is not complete. They often bear great pain,” Zhou said. “When it comes to palliative care for children, pain relief is the key. And the treatment can be carried out in any course of the disease.”
Limited by stretched resources, the number of hospitals and welfare institutions able to offer palliative care for children on the Chinese mainland is no more than 20, according to estimates by Daisy House.
Shimao Rainbow Care Center For Critically Ill Children is one of them. Established in 2014 in east China’s Nanjing City, the center has received more than 100 severely ill children from local welfare institutions.
“We provide palliative care and rehabilitation nursing for child patients, and help relieve symptoms by giving medicine, massage and other treatment,” said Huang Fang, who is in charge of the center.
A boy nicknamed
Xiaoyu was diagnosed with advanced stage of brain tumor, and doctors said he had little chance of survival after several surgeries. Under the care of the center, his tumor became miraculously smaller without any medical intervention.
Not all kids are so lucky as Xiaoyu. At times, the center provides palliative care for terminally ill children and sees them leave this world with less pain.
Helping children die is a difficult subject to talk about, and the development of palliative care faces multiple challenges including shortage of personnel and medical resources as well as lack of social understanding and acceptance.
Under Zhou’s efforts, more doctors are studying and promoting palliative care for children in China.
“Hopefully one day, at least all children’s blood tumor centers in China can have medical teams offering palliative care to make dying less painful for terminally ill kids,” said Zhou.
(Xinhua)