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January 8, 2012

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Debunking the body donation taboo

DEATH is still a no-go topic, an absolute taboo and a bad omen for most Chinese people. Everyone wants to die with dignity and have a decent funeral with an intact body - even before cremation - after he or she passes away. For Chinese, ensuring an unviolated body is the least respect one could pay to the deceased.

No wonder the idea of whole body donation for medical research, which has been promoted for almost three decades in China, still fails to gain social acceptance today.

"It's quite a sensitive topic because people avoid talking about death. Yes, we joke about death in daily life often, but not in this way. Body donation is a scary and crazy idea for most Chinese," says Sun Xin, who has been operating the body donation program in Shanggang Community, Pudong New Area, since the middle 1980s. He is a potential donor.

Because of the intense stigma associated to his job, people often insult Sun and his colleagues by calling them "body snatchers" or "grave diggers."

This comes despite intense efforts by the Shanghai Red Cross Branch and the Shanghai Public Health Bureau to promote body and cornea donation throughout the city since 1982.

Shanggang, one of the largest communities in Pudong, located close to the 2010 Shanghai World Expo site, was the first in the city to set up a consulting office for body and cornea donation under the supervision of the Shanghai Red Cross Branch about 10 years ago.

Last year, 31 Shanggang residents signed up to become potential body and cornea donors, which has added to the total number of 282, including 81 cornea donors, in the community. So far, 43 have made the donation.

"Shanggang is the city's first community to do body donation and has the most potential donors," Sun says.

The office in Shanggang Community helps donors to register and sends paperwork to the relevant authorities, while promoting body donation among local residents.

Bumpy road

According to the city's Regulation of Body and Cornea Donation, published in 2000, only district- or county-level administrative departments are eligible to receive applications from potential donors.

Today Shanghai has 25 consulting offices across its communities and by the end of last year a total of 29,629 people have registered to be potential donors in the city and 5,618 have made the donation.

"We are still on a bumpy road now, but I can feel people are changing their attitudes gradually, though some keep calling us 'body snatchers'," Sun says.

In the traditional Chinese perspective, one who dies with a broken, misshapen or incomplete body can't enter the afterlife and would become a wandering, lonely ghost in the World of Dark forever - never to find peace.

Those who have committed many evil deeds while alive also receive this punishment after death. Their bodies are torn up by horses and scattered in different places.

"It's an ultimate humiliation to a man and his family," Sun says.

According to the regulation, a potential donor must get approval from at least one of his closest relatives before registering. "No family signature, no donation. We keep it very strict. It is a way to save us trouble and to some degree a way to protect us," Sun says.

When the 52-year-old man decided to become a donor, his 26-year-old daughter resolutely refused.

"I knew what she was worrying about. How would our friends, family members and neighbors look at her if her father can't have a funeral? She would think her father's body might be lying on an ice-cold autopsy table, waiting for a dissection done by inexperienced medical students," Sun says.

It took about one year for him to convince his daughter to sign the paper. "I reasoned with her and asked for her support and understanding," he says.

When he brought this up over dinner, his daughter just ate silently with tears in her eyes.

"I told her it was daddy's only wish and I hoped she could help me realize it."

Sometimes a family signature is still no use at all. It often happens that the relatives pull back at the last minute and tear up the signed papers.

Earlier this year, a potential donor living in the Dezhou Neighborhood died of heart disease. When Sun and the doctors from Shanghai No.2 Military Medical University went to his house to collect the body, the donor's brother locked the door from inside and yelled at them.

They could do nothing but leave. "Sometimes even with the family member's signature, we still can't take away the body. There is nothing we can do about it," Sun says.

Sister registers

In many cases, a potential donor prefers to keep it as a secret that is only known by one or two close family members till the day they die.

In Shanghai every year about 1,500 people register to become potential body donors and roughly 400 make the donations. However, statistics show that the city's medical schools and hospitals need more than 600 bodies for medical research, which leaves a 30-percent shortage.

More than 70 percent of the bodies donated are used for dissection practice in medical schools, while 18 percent are for scientific research and 12 percent are used for pathological studies.

Zhu Qi, 56, director of the Shanggang's Body Donation Association, is the 100th registered donor in the community, her disabled younger sister Zhu Cen the 101st.

The younger Zhu suffered from a soft bone disorder that caused deformation of her toes and fingers after her mother was exposed to poison gas during pregnancy.

As an elder sister, Zhu Qi took responsibility for her sibling.

However, as Zhu Cen grew up, her situation deteriorated. On her deathbed she decided to donate her body to the Shanghai Jiao Tong University School of Medicine for medical study.

"She said she was useless when alive, but wanted to make some contribution after her death, though it might be slight, to society," the senior Zhu recalls. "And I told her, I was your elder sister and let me be the first one."

Both sisters registered to become donors, but Zhu Cen passed away in 2005 and the donation was made.

Now every April during the Tomb Sweeping Festival, Zhu travels one hour to the remote Fushou Graveyard in Qingpu District, where a giant monument has been erected for body donors with 1,700 donors names already inscribed on it. Her sister's name is among them.

"It needs the support from everyone," says Zhou Xianglan, director of the Volunteer Service Department of Shanghai Red Cross Branch. "We should pay great respect for the contribution they've made."

Yang Tao, a student majoring in Clinical Medicine at Shanghai No.2 Military Medical University, still has a fresh memory of the dead body he faced in the autopsy room during his first dissection class.

"We were all very excited, yet a little bit scared," he recalls. The 22-year-old student was desperate to know what it would feel like to hold a scalpel in his hand for the first time.

"But our professor asked us to stand up and mourn for the deceased silently for three minutes," Yang says. "It suddenly reminded me that what I was facing was not just a body for us to dissect, but also a noble man who had donated all he could give."

Then his professor explained the regulation to the students, which made the young Yang realize the sharp conflict between China's centuries-old traditions and the development of modern medical studies.

"My first dissection class was more like an ethics lesson," Yang says. "Each donated body is a place where a sacred soul once lived. I think the only way for me to pay back is to study hard and to save more people's lives with the skills I've learnt. I think it's also the wishes of the donors."




 

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