Hospice and end-of-life care are fairly well developed in the West, but in China death is often a taboo subject. One courageous man finds the meaning of life in easing the last days of others. Tan Weiyun reports.

Everything will be okay. I'm here with you," Huang Weiping whispers to a frail patient, gently holding her cool, bluish hand.

"Many people leave this world filled with pains and resentments. Their relatives always think it's best to find a good doctor and good hospital," Huang says. "But maybe what these people in pain or in their last days really need is a warm hand that can help make their final time comfortable and help them die with dignity."

That's Huang's mission.

However, many people regard him and his calling with suspicion as death is a taboo or sensitive subject in China. Even saying the word is considered by some to be unlucky; being around death is to be avoided.

Huang is founder of Hand in Hand Life Care and Development Center, Shanghai's first nongovernmental organization offering hospice care to dying patients with terminal ailments and elders, in the Pudong New Area.

It started last month and volunteers work in hospitals, nursing facilities, seniors' centers and homes. But Huang had already been volunteering, starting at the Shanghai Cancer Hospital at Fudan University Medical College.

Shanghai native Huang began his end-of-life caring mission two years ago after he spent two months in Sichuan Province after the devastating earthquake on May 12, 2008. He felt that his eyes and heart had been opened.

Before that, he was a successful stock holder and businessman engaged in foreign trade. "I made some money," he says modestly.

The turning point came when he was least expecting it, at a time when everything in his life seemed good.

"One day I suddenly felt that all I had was nothing. It was as though I had lost the impetus in my life to go forward. Making money wasn't important anymore," Huang says.

He returned to college and studied psychology at East China Normal University, where he thought more about his life's course. He received a degree in psychology and obtained a license, deciding he wanted to use what he had learned.

The volunteer trip to Sichuan unsettled him greatly; it was transformative.

He saw bodies wrapped in white shrouds and placed along the roadside. He also saw survivors filled with gratitude, hope and the will to live.

"For the first time in my life, I felt I was helpful and useful to others," Huang recalls.

He distributed cigarettes to survivors, chatted with soldiers and gave candies and chocolates to children; he played games and sang and danced with children, though he recalls he must have looked ridiculous.

He felt his temperament was changing and his heart was getting softer. "Every day I cried over some of the littlest things, it was just hard to control myself," Huang says.

When a child asked why the mountains had bumped together, he comforted her by saying the mountains were getting married. "I couldn't tell her the truth. I lied to her," he says with a sigh.

Trekking deep into mountains, Huang and others came across an elderly villager who begged them to save the children.

"He cried, saying he was old and would die soon but feared to leave the children behind. He shouted and cried, and I cried too," he says.

In Sichuan, Huang met another volunteer who had volunteered part-time in the No. 25 Ward of the Shanghai Cancer Hospital for terminally ill patients; there he provided counseling and comfort.

Hospice pioneers

The ward is the last stop after medical science can do nothing more. Palliative care and comforting is provided.

"It is a hospice ward as a matter of fact, but patients and their families avoid using the word, so it's just called No. 25 Ward. Everyone knows what it is," says Huang.

Back from Sichuan, Huang decided to set up a group of hospice volunteers who would help calm patients' minds and help them end their days in peace.

In Shanghai, few people were (or are) engaged in hospice work, except for several volunteer psychologists who defy cultural taboos.

Huang established the group together with his partner Wang Ying, who quit a high-salary job in advertising. It is comprised of around 40 people, including psychologists; most are over 30 and have a stable job.

"Generally speaking, everybody is welcome. There's only one requirement - he or she must have a caring mind," Huang says. "But personally I think people over 30 years old with more life experience are more suitable. Sometimes young people like university students cannot realize the true meaning of the work."

Volunteers take a one-month course before they step into Ward No. 25. They learn how to win patients' hearts and how to begin the very first conversation, how to deal with the family, how to deal with one's personal mental health when a patient passes away.

There are lots of dos and don'ts, including: don't mention death if possible since even patients who know they're dying don't want to hear it; don't give medical suggestions or nursing care; don't offer food or drink; don't accept money or gifts from patients' families; don't get involved in family disputes; don't reveal your own sadness or grief.

Members of the team come and go. Huang and Wang remain. "At first I didn't understand why people couldn't hang on because the work was so important, but then I realized that the job takes its toll and requires personal introspection," Huang says. Many volunteers returned after several months, saying they had "thought things through."

Hospice patients share many things about their lives beside their disease: their youth, love stories, children, life regrets and even some deeply buried secrets.

"A male patient asked us to tell his wife he wanted to have sex because he felt he was okay, but his wife flatly refused," Huang says.

At the very beginning, it was a group of volunteers, working at the hospital and also going to homes. But Huang decided to develop a licensed NGO after the death of woman cancer patient whom he had let down.

The woman with terminal uterine cancer had been sent home until her conditioned worsened. She sat on the bed all day and often asked Huang to buy books on psychology. He bought many but she didn't read them. She asked him to find lawyers to deal with property issues with her husband and find technicians to fix Internet access at her home.

"I felt a little cheated and used," Huang says, "but I tried to meet her needs and said nothing."

He was busy managing the volunteers and visited her less frequently. "Her condition was deteriorating and from deep in my heart I feared to face death," he says.

In July 2008 he received a phone call from the woman asking for a therapist. He was in Beijing. "Somehow I dodged her," he says. That was her last phone call.

In October Huang returned to Shanghai and called the number he had avoided for months. "The patient's sister answered; the woman had passed away a month before."

He wept.

"All of a sudden I felt how mean and shameless I was. What a bastard I was," he says, eyes filled with tears. "I looked at how I had treated her. I suspected she was cheating me for not reading the books, using me to run errands. I realized that last phone call wasn't about a therapist, but I didn't catch on at the time."

Huang gave it a lot of thought and found that the patient was the one to help him.

"Those on the threshold of death are much stronger than we think. Their souls are soaring far higher than ours and can see everything crystal clear," Huang says. "We're the weak ones who fear death, have selfish thoughts and distrust others.

"They come to help us, find these dark sides of ourselves and illuminate us," he says.

Huang's Hand in Hang group lectures in schools and in business enterprises, calling for more love and care for seniors.

The Pudong New Area Government provided an office in an industrial park with three years' free rent and donated 200,000 yuan (US$30,134).

"What I'm happy about," says Huang, "is that many people are paying more attention to hospice care and more people are joining and supporting us."


Those interested in donating or volunteering can contact weiping_huang@hotmail.com.