Facing death: Palliative care for children and families

Pictures of Zhou Xuan and her team Photo: Zheng Xiaolu

“Mum, if I couldn’t be cured, what would you do? To go away with me, or to move on?” 13-year-old Ling (pseudonym) looked her mother in the eye, stressing it three times: “I mean ‘if’, mum.”

Since Ling was diagnosed with hematology and oncology disease half a year ago, she has gone through a main surgery and many sessions of chemotherapy, experiencing untold pain.

This time, the mother dared not look into her daughter’s eyes, but just replied: “What do you expect me to do?”

“I hope you could move on, strongly,” Ling smiled to her mother, answering without hesitation.

“Many teenagers could think of death, and I have been thinking is it the Chinese culture that doesn’t allow us to discuss death with children? Is it wrong to discuss death?” asked Zhou Xuan, a doctor from the hematology/oncology center of the Beijing Children’s Hospital.

Zhou has been a hematology and oncology doctor for 17 years, seeing too many painful families that had to face their juvenile children leaving the world.

We Chinese have been taught from a very small age that death is a terrible thing. When we mention death, it is always associated with ugly ghosts, Zhou said, adding that while in Western culture, movies like Ghost told people that a ghost could help us or even have spiritual communications with us.

Death should be dealt with dignity

In a country where the topic of death is always kept under water, people, especially children, with painful and deadly diseases find it hard to leave the world with dignity.

Mei (pseudonym), a lovely 10-year-old girl, left the world with great pain. Her last minute beauty waned with the pain caused by a tumor compressing her body. She lied there, naked and bony, with needles inserted all over her body. She was without hair, without strength, and her mother was sitting by her bed, waiting for the last moment to come. Finally on one night, Mei passed away. Her mother bowed to each medical staff on the spot, appreciating their efforts to save her daughter.

“But I think the girl left the world without any dignity,” Zhou said, with dim eyes.

When asked if the girl knew about death, Zhou said at that time no one even mentioned death to her, as everyone thought hiding the truth was best for her.

But actually children are very smart, and they could feel death, even the babies just born for a few months.

Zhou recalled talking about the illness with a mother who held her baby of a few months in her arm. The mother fell into tears, and the baby suddenly stopped crying, quietly looking at his mother, then moved his hand to wipe off his mum’s tears.

When there is little possibility to live, how to help the children and their families ease the pain, mentally and physically, becomes our priority, said Zhou, who then established a special fund under the “New Sunshine Fund” to promote children’s palliative care.

Zhou Xuan Photo provided by the Center for Children's Palliative Care

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, according to the World Health Organization.  The care is done through the prevention and relief of suffering by means of early diagnosis and treatment through physical, psycho-social and spiritual means.

Zhou said her fund aims to help not only the children who are unlikely to be cured, but those with possibilities to be cured. For the latter, we could help to relieve their and their families’ pain to pave the way for a better life, while for the former, we hope we could help them ease the pain and provide a dignified way for death, Zhou added.

“Each child, even a one-day old, is an independent individual, and he/she has the dignity,” she said.

Earlier, when there was little hope for a child to be cured, the parents would usually insist on taking continuous treatment, either because they could not afford the thought of losing their child, or they could not afford the public condemnation for giving up the treatment, in the name of “responsibility” or “love”.

However, treatment is only meaningful under the circumstance of great possibility of cure, otherwise the pain keeps accumulating for patients. From the medical point of view, 1% hope means no hope at all; while for many parents, 1% hope and 100% hope makes no difference to them.

“They think it is meaningful as long as the treatment continues,” Zhou said with a slight sigh.

Now with the involvement of palliative care, difficult moments could be faced with ease and calmness. Many parents told Zhou’s team about their children’s departure: “It is really like falling asleep.” “She was sleeping quietly, we called her, and there was no more response.”

“It is fair to the children. They kept their dignity, had the company of family members who love them and experienced no more fear, absolutely no,” Zhou said.

Death could be faced with bravery

For children at a higher age, leaving with dignity also means they have the right to know about their coming death.

“But it is very tough to do so,” Zhou admitted, “You need careful wording, and when you see their happy smile, you would hesitate whether to tell them the truth.”

So we only talk death when they are ready, like Ling mentioned above, Zhou said, adding that after Ling told her mother to move on bravely, they realized she could be ready for a talk on death.

A room in the Center for Children's Palliative Care Photo: Zheng Xiaolu

Ling’s father, a doctor as well, agreed with Zhou on telling his daughter about her coming death. The talk took place in Ling’s ward. “I sat by her bed. As there were other patients in the same room, I talked in a low voice,” Zhou recalled.

I asked: “Have you ever thought of what will happen if the illness can’t be cured?” She suddenly burst into tears, but in a restrained manner.  When she calmed down, I asked: “Are you frightened by such an idea? Are you afraid of the pain you have to suffer during the cure?” But Ling answered with a firm “No!”

“I am only concerned that my mum and dad will be very worried about me. I am concerned of my grandparents. My grandpa has a hypertension, and I am quite worried he would be striken by the news,” Ling said, according to Zhou.

Ling left the world two months ago.

“Children’s minds are much tougher than we think, and they don’t care about (death or even pain) at all,” Zhou said, what they care most is usually their parents. They are very reluctant to see parents being heartbroken because of their illness.

But not every child is ready to accept death, and 12-year-old Feng (pseudonym) is among them.

Feng’s parents came to doctor Zhou, saying they lost hope for cure and would like to go home. But Feng, who had the disease for eight years and experienced several relapses, refused to go home. “I must take the treatment, otherwise I can’t live on,” he said firmly. His parents were exhausted, and couldn’t afford further treatment. Such disease usually cost a family at least over 100,000 yuan each year.

After a long talk with little Feng, doctor Zhou asked if he was still afraid of not being cured. Feng answered with a good attitude: “No, I am not afraid anymore, I just feel a bit regret.”

Zhou was relieved, and thought the boy could face the fact. But soon the nurse came with a feedback: the boy told his father: “I don’t want to see that aunty anymore! She asked me not to take further treatment!”

Unique difficulties, common love

Each family has its unique problem, and needs to be dealt with differently. Zhou and her team aim to guide the family through the toughest period, such as the last moment.

“I will tell them when to prepare the clothes, and I will let them know 99% of the last minute would come in a very calm way, which they could not imagine,” Zhou said.

When asked if Western parents would find it is easier to deal with such a situation as religious belief may provide children with a brighter picture of heaven, Zhou said at first she thought so. But after translating their practical handbook on children’s palliative care, we found telling children about death is equally difficult everywhere.

“Although the culture is different in the East and West, there is one thing which is identical: the love parents have for the children,” Zhou said.

A room in the Center for Children's Palliative Care Photo: Zheng Xiaolu

Wherever they are from, no matter rich or poor, the love toward their children is the same, so the difficulty they face is the same. It is tough to tell their children calmly: my child, you are just going to the heaven.

But religious belief could be a good means to help children and their families ease fear of death, Zhou added.

Zhou’s dream for 2017 is to set up a ward for children’s hospice care, where the family could stay with ease and comfort while taking medical and psychological guidance. The dream only came true recently.

“I had not expected so much progress in just three years’ time since I started to promote the children’s palliative care in 2013,” Zhou said.

Looking forward, Zhou hopes her team would set an example for children’s palliative cure and expand the treatment to areas as wide as possible, then finally reach her small target: to have the government involved and provide with support.   

“When you really want to do something, you will find out the whole universe is helping you,” Zhou said, “I am really feeling so.”

A room in the Center for Children's Palliative Care Photo: Zheng Xiaolu

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